And now for a topic that everybody loves! INSURANCE!
Aha . . . ahahaha . . . ha . . . ha ha ha . . .
*ahem* Anyway . . .
Insurance is a discussion that nobody likes, but let me tell you why it's an especially difficult conversation for people who are chronically ill.
Work Insurance is Great! . . . When It's There
As if jobs and job hunting and benefits weren't fun enough to worry about and think about, for people with chronic illnesses it can literally be a matter of life and death.
"Isn't that kind of dramatic?" you may ask. "It might be inconvenient, but surely it's not THAT bad."
Well, my friend, it really IS that bad.
Chronically ill people have a hard enough time as it is finding and maintaining work because of their illnesses. Making sure they are covered by insurance just makes it all harder. Part time hours, which are more workable with chronic health challenges, don't always provide benefits. Those benefits are almost always necessary for people with chronic health issues to remain on the healthier side of things. Shots, x-rays, inhalers, epipens, insulin, mood regulatory meds, gut health meds, chemo treatments--all of these things get impossibly expensive ridiculously fast. Many of them START ridiculously expensive. Even with insurance. Not being able to have benefits is devastating for anyone suffering with chronic illnesses.
And we need those things to live. Not want. NEED. A person can die from allergic reactions without epipens. Asthmatics can suffocate without the right inhalants. People with lupus cannot function in the levels of pain they experience without proper treatments.
Places that don't provide insurance are exacerbating the growing health crises that our society is facing. Some people CAN'T work more than part-time hours, nor do they always live with people who can cover them with their own insurance, like parents or spouses. If people can't afford to be healthy, their health won't improve and they will be forever stuck in a spiral of being too ill to work but being too poor to not work.
Even When Insurance is There, It's Not Always There Enough
Okay, so someone with chronic illness thinks they can manage, or they have to learn to manage, a full time job and, yay, it comes with benefits!
Oh wait, those benefits don't start for three months, maybe longer.
In the meantime, how does someone with chronic illness survive? Sometimes they can get several months of medications ahead of time, but sometimes they can't. Do the people who can't stockpile meds deserve to have their health and their lives at risk while waiting for insurance to start? What if their illness takes a turn for the worst and they need more care, sooner? And even if they have the meds, there's still doctors visits and therapists that we need to see regularly. How can we pay for that?
State insurance and government aid are great, but not everywhere accepts them or they only accept specific kinds. And they aren't endless wealth banks. As nice as it is to have alternative aid available, it's not all-powerful.
And Then, Insurance Doesn't Even Cover Everything
Insurance not covering everything goes two ways:
1. Deductibles are murder
2. Not all chronic health challenges are recognized or covered by insurance
I don't know that I need to go too far into the deductible problem (although I will in a future post if it requested!), but the second problem is a REAL problem. While chronic health problems are on the rise, there's still enough stigma and not enough information on a lot of them for them to be considered real problems that insurance should cover. That makes it really, really difficult to afford taking care of them. A lot of insurances also don't cover pre-existing conditions, so there's that.
Then, when insurance does cover them, you have to go through a million tests (which you have to pay at least part of if you're deductible isn't met) for them to make sure that the problem you have is, in fact, the problem you have. If you switch insurances in the middle of this process, you get to start it all over again, paying for it all again. When you're already struggle making ends meet.
Finally, if they can't pinpoint exactly what isn't working, or why it isn't working, all that money is just wasted. Sometimes they can give people things to help the symptoms, but the overall problem going untreated means that you're treating symptoms forever. When that happens, they don't always give out prescriptions and instead suggest over-the-counter or at-home remedies that you have to pay for out of pocket. While on the one hand, it might be nice to worry about prescriptions, on the other hand no prescriptions means completely out-of-pocket expenses.
Overall, Insurance and Chronic Illness Aren't Friends
My dream would be to change the medical world to be less about making money and treating symptoms and more about the actual wellness of the people. It shouldn't be a fight to get necessary medical care just to live. Life shouldn't be a long punishment game; it's plenty hard as it is living on Earth without people making it harder on each other. Insurance companies, while making some things about health easier, also created a nightmare with their policies. Jobs, while kindly providing insurance benefits, are also keeping their employees locked in deathly cycles.
Chronic illnesses don't just magically go away if insurances and jobs don't believe they exist. They're still there and they're still a need to be met. Hopefully, by opening up more discussions about the need for better health care, we can come up with some real solutions that actually help people without making other peoples' lives worse.
As always, comments are welcome!
Cheers~
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub
Friday, December 20, 2019
Friday, December 13, 2019
Chronic Illness and Finding Expression in Media
I'm sorry I didn't get anything out the last couple of weeks! I have been really ill and unable to write (or do a third of the things I wanted to do). But here I am, ready to tackle a new topic related to chronic illness!
A bit of a disclaimer before we start: this is really a pretty big topic with a lot of facets to it. With the time and energy I have, I probably won't be able to do full justice to this topic at this time. However, since I am dedicated to this series of blog posts on chronic illnesses, this is a topic that will most likely feature several times over the course of this blog, and, hopefully, will receive the full attention it deserves. In this post, I will simply do my best to cover as much as I can here.
*metaphorically cracks knuckles* Here we go!
A Word on Media
"Media" is the plural form of "medium." A "medium" is a conduit, a middle ground. In art, "medium" is heard probably more commonly than anywhere else: photography is an art medium, pastel is an art medium, and so on. We tend to talk about "The Media" as an all-encompassing, mostly news and TV oriented feature that gives us information and represents conflicting ideas.
When I speak of "media," I am talking about ALL of the conduits: books, art, TV, video games--all of it.
Media as Conduits of Representation for the Chronically Ill
Overall, there is very little in popular media by way of representing ANY kind of disability, but especially chronic illnesses. Most commonly, you might find cases of dismemberment, blindness, and PTSD, among a few other rarities. While it's great that what gets attention is, in fact, getting attention, it still leaves waaaaaaaay too many disabilities, especially chronic illnesses, underrepresented.
Why is it important to have representation in the media?
Because it allows people to see a reflection of themselves in something, which gives them a new, different perspective on the challenges they're facing or the choices they're making. It also allows people who might not be exposed to those challenges to have a glimpse into the lives of other people, and to see those struggling individuals as real, feeling humans. Think about books: books are well known for being ways of experiencing thousands of different lives different from your own. That is just one example of the power of media to help people understand situations they may never experience themselves. Representation can help you and others build empathy.
But there's more.
Representation is MOST helpful when done in respectful, appropriate ways. Showing chronically ill people as always being miserable, always needing a cure, or always being the focus of an inspirational journey really isn't always helpful. We are NOT all miserable, even in our struggles. There ISN'T always a cure, and even if there is, it's not always possible, plausible, or needed. And while it is totally possible to learn from chronic illness and be inspired by the struggle, most of us are just living ordinary lives around our chronic illnesses.
While we often feel broken, it is actually painful to always be portrayed as broken. We may not be able to live the same lives as other people, but we can still live wonderful, purposeful lives WITH our illnesses. What we need first is for people to love and accept us as we are before trying to say we need to change or be different.
Another facet of media as conduits for representation is the need to show chronically ill and disabled in different lights. It is important to us to see our issues on an extraordinary AND ordinary level.
A superhero with fibromyalgia? How about yes!
An aspiring author with arthritis? How about yes! (I actually know a few people with this particular setup. They are A M A Z I N G~)
A regular house mom with postpartum depression or anxiety? How about yes!
A student who is working through life with chronic fatigue? How about yes!
Very few of us are living extreme lives, so it's good to see us represented in a variety of ways. People can create positive narratives of "these people are living good lives with the problems they live with" instead of heart-wrenching stories of "look how inspirational this person is in overcoming chronic illness" or "they're trapped by this illness and still carry on!" Life with chronic illnesses is what it is. And that's not always a bad or negative thing.
Media as a Tool for Processing and Regulating How We Handle Chronic Illness
There are two main ways that chronically ill people consume media in relation to handling their illnesses:
1. Passive consumption (e.g. watching TV or movies, reading, observing art pieces that speak to us, video games)
2. Active consumption (e.g. cosplaying as characters that we relate to, creating original fiction, creating transformative works, creating art, video games)
Both of these ways are important in the act of processing what we're experiencing.
For myself, I usually participate in passive consumption of media. Reading a book or watching a movie helps me disengage from from my problems and afflictions and lets my subconscious process things without actively having to worry about it. It allows me to escape for a while so I can come back and face things more easily. Personally, I mostly avoid stories that remind me of my problems, but for other people it can be cathartic to read or see how other people handle their same problems, fictionalized or real. It's seeing your life in a mirror without being the one to make the decisions or take the fall. You get the benefit of living vicariously through others while also healing from your pains.
I view active consumption of media as a more head-on approach to processing chronic illness (and other life challenges). To create something, you really have to look at it, acknowledge it, and figure it out. Creation takes your emotions and puts it out to the world, where it has to be looked at and acknowledged. As a child, my sister and I roleplayed an imaginary world where we were able to take all the ugly, awful things that happened to us and turn them and twist them into magical adventures. A lot of what we imagined was pretty dark for a six and twelve year old! But it helped us live in a dark, harsh world without caving in. It can be incredibly empowering to take the things that hurt you or confuse you or just make life difficult, and turn it into something visible, moldable, and that you have control over.
We may not be able to control the situations we're in, but we can control how we handle them through our media consumption. We can find a community we relate to, find self-acceptance and love, and begin to feel a little more human.
On the flip side, immersing yourself too much in media consumption, even if it is healing and helping, can be seriously detrimental. It can be way too easy to be caught up the negative thoughts, feelings, habits, and expressions that you find and express in media. Self-justification ("I see that others have these same problems so it's okay for me to wallow, because it's normal," etc.) or allowing life to fall by the wayside are both really bad things. Making sure that what you put out into the world is put out there in a way that doesn't harm others (commonly done via appropriate tagging) is important.
And so . . .
Media are powerful tools for good, and it's important to be aware of the uses in relation to chronic illnesses, and aware of the negative side-effects that could occur, so that media CAN be used for good. It is important to show people with chronic illnesses in a variety of ways; it helps both the chronically ill and people who aren't chronically ill in understanding themselves and each other. Like any tool, it is how you use it that matters.
Cheers~
Shoutout to my patron Kyle for requesting this topic, and my friend Carissa for helping me find the words for this! You guys rock!
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
A bit of a disclaimer before we start: this is really a pretty big topic with a lot of facets to it. With the time and energy I have, I probably won't be able to do full justice to this topic at this time. However, since I am dedicated to this series of blog posts on chronic illnesses, this is a topic that will most likely feature several times over the course of this blog, and, hopefully, will receive the full attention it deserves. In this post, I will simply do my best to cover as much as I can here.
*metaphorically cracks knuckles* Here we go!
A Word on Media
"Media" is the plural form of "medium." A "medium" is a conduit, a middle ground. In art, "medium" is heard probably more commonly than anywhere else: photography is an art medium, pastel is an art medium, and so on. We tend to talk about "The Media" as an all-encompassing, mostly news and TV oriented feature that gives us information and represents conflicting ideas.
When I speak of "media," I am talking about ALL of the conduits: books, art, TV, video games--all of it.
Media as Conduits of Representation for the Chronically Ill
Overall, there is very little in popular media by way of representing ANY kind of disability, but especially chronic illnesses. Most commonly, you might find cases of dismemberment, blindness, and PTSD, among a few other rarities. While it's great that what gets attention is, in fact, getting attention, it still leaves waaaaaaaay too many disabilities, especially chronic illnesses, underrepresented.
Why is it important to have representation in the media?
Because it allows people to see a reflection of themselves in something, which gives them a new, different perspective on the challenges they're facing or the choices they're making. It also allows people who might not be exposed to those challenges to have a glimpse into the lives of other people, and to see those struggling individuals as real, feeling humans. Think about books: books are well known for being ways of experiencing thousands of different lives different from your own. That is just one example of the power of media to help people understand situations they may never experience themselves. Representation can help you and others build empathy.
But there's more.
Representation is MOST helpful when done in respectful, appropriate ways. Showing chronically ill people as always being miserable, always needing a cure, or always being the focus of an inspirational journey really isn't always helpful. We are NOT all miserable, even in our struggles. There ISN'T always a cure, and even if there is, it's not always possible, plausible, or needed. And while it is totally possible to learn from chronic illness and be inspired by the struggle, most of us are just living ordinary lives around our chronic illnesses.
While we often feel broken, it is actually painful to always be portrayed as broken. We may not be able to live the same lives as other people, but we can still live wonderful, purposeful lives WITH our illnesses. What we need first is for people to love and accept us as we are before trying to say we need to change or be different.
Another facet of media as conduits for representation is the need to show chronically ill and disabled in different lights. It is important to us to see our issues on an extraordinary AND ordinary level.
A superhero with fibromyalgia? How about yes!
An aspiring author with arthritis? How about yes! (I actually know a few people with this particular setup. They are A M A Z I N G~)
A regular house mom with postpartum depression or anxiety? How about yes!
A student who is working through life with chronic fatigue? How about yes!
Very few of us are living extreme lives, so it's good to see us represented in a variety of ways. People can create positive narratives of "these people are living good lives with the problems they live with" instead of heart-wrenching stories of "look how inspirational this person is in overcoming chronic illness" or "they're trapped by this illness and still carry on!" Life with chronic illnesses is what it is. And that's not always a bad or negative thing.
Media as a Tool for Processing and Regulating How We Handle Chronic Illness
There are two main ways that chronically ill people consume media in relation to handling their illnesses:
1. Passive consumption (e.g. watching TV or movies, reading, observing art pieces that speak to us, video games)
2. Active consumption (e.g. cosplaying as characters that we relate to, creating original fiction, creating transformative works, creating art, video games)
Both of these ways are important in the act of processing what we're experiencing.
For myself, I usually participate in passive consumption of media. Reading a book or watching a movie helps me disengage from from my problems and afflictions and lets my subconscious process things without actively having to worry about it. It allows me to escape for a while so I can come back and face things more easily. Personally, I mostly avoid stories that remind me of my problems, but for other people it can be cathartic to read or see how other people handle their same problems, fictionalized or real. It's seeing your life in a mirror without being the one to make the decisions or take the fall. You get the benefit of living vicariously through others while also healing from your pains.
I view active consumption of media as a more head-on approach to processing chronic illness (and other life challenges). To create something, you really have to look at it, acknowledge it, and figure it out. Creation takes your emotions and puts it out to the world, where it has to be looked at and acknowledged. As a child, my sister and I roleplayed an imaginary world where we were able to take all the ugly, awful things that happened to us and turn them and twist them into magical adventures. A lot of what we imagined was pretty dark for a six and twelve year old! But it helped us live in a dark, harsh world without caving in. It can be incredibly empowering to take the things that hurt you or confuse you or just make life difficult, and turn it into something visible, moldable, and that you have control over.
We may not be able to control the situations we're in, but we can control how we handle them through our media consumption. We can find a community we relate to, find self-acceptance and love, and begin to feel a little more human.
On the flip side, immersing yourself too much in media consumption, even if it is healing and helping, can be seriously detrimental. It can be way too easy to be caught up the negative thoughts, feelings, habits, and expressions that you find and express in media. Self-justification ("I see that others have these same problems so it's okay for me to wallow, because it's normal," etc.) or allowing life to fall by the wayside are both really bad things. Making sure that what you put out into the world is put out there in a way that doesn't harm others (commonly done via appropriate tagging) is important.
And so . . .
Media are powerful tools for good, and it's important to be aware of the uses in relation to chronic illnesses, and aware of the negative side-effects that could occur, so that media CAN be used for good. It is important to show people with chronic illnesses in a variety of ways; it helps both the chronically ill and people who aren't chronically ill in understanding themselves and each other. Like any tool, it is how you use it that matters.
Cheers~
Shoutout to my patron Kyle for requesting this topic, and my friend Carissa for helping me find the words for this! You guys rock!
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
Friday, November 29, 2019
"Why Do You Care?"
I had a completely different topic prepared for this week, and I apologize for my patron who asked for that topic. The topic was supposed to be on how chronically ill people relate to the media and use it as an escape buuuuuuuuuuuuuuuuuuttttttttt . . .
. . . someone asked me a question that really got me going, so I decided to post on that. I may still get that other post done this week. If not, it will for sure be the post for next week! My apologies!
On a topic pretty different from this one, I got into an argument with a person and they asked me, "Why do you care?" To them, I fit into the perfect demographic where I wouldn't have to worry about what the topic was about. Why should I care, then, about people who are apparent outliers from the perfect demographic?
Why should anyone care, if it doesn't apply to them?
What an arrogant question! To think that you are the only group of people to matter, that your experiences are the only ones that matter because the struggles of other people don't apply to you! That right there is privilege in action.
I'm not here to go into Privilege as a topic, but I want to talk about how people should care, or at least why *I* care, about the topic of chronic illness. Even if it doesn't apply to you.
My Story
While I have always had food allergies and have a lengthy history of getting ill from common viruses, and have had asthma since high school, growing up I was still mostly able. I couldn't keep up with the more athletic people, but I still did fairly well for myself. In college, especially, my health was really great. I was eating right, exercising, and actually getting a decent amount of sleep regularly. I am a fiercely independent person and love being able to take care of myself and my affairs.
When I got home from college, I single-handedly took over cooking dinner and cleaning for my entire family.
Then I went on a mission for the church I belong too. While it was an amazing experience, it also killed my health. Arthritis and gall bladder failure have made a mess of my body. For the last three and a half years, I have no longer been "able."
I won't bore you with all the details of my illness, but I will say that it has been an incredibly eye-opening experience.
Illness can strike anytime, anywhere.
Your life can change in a month, in a day, in a moment.
There are some things in life that you can't work harder to overcome.
Even doing everything right for your body, your body can still fail on you.
Placing blame does nobody any good when it comes to chronic illnesses.
Chronic illness doesn't just affect you.
When you or someone close to you gets chronically ill, it changes a lot of things. I came home from my mission only able to do the most basic things. Everything made me hurt or made me ill. "Taking care of" myself did nothing to alleviate my systems. It took months for them to diagnose my symptoms correctly, and my body became so messed up that I'm still not recovered.
It affected my family. My mom had to cover all of my expenses. I couldn't work, I couldn't go to school, I could barely drive (many days, I couldn't drive at all). Light stresses tanked me.
It affected my relationships. I couldn't go on dates. Living in perpetual brain fog made it difficult to reply to my friends and keep relationships going. I always had to cancel plans because I ended up being too ill to go after all. People stopped asking me to join them because they figured they were just bothering me. I was so, so lonely.
It affects my marriage. Not many people would have been brave enough to marry someone with chronic illness. My husband is a gem for taking on the entirety of the financial burden of being married to me, as well as taking the emotional and physical burden of taking care of someone chronically ill.
Being chronically ill isn't a one-person problem. It involves a lot of people. You probably know several people who are chronically ill, but if you tell people that that doesn't concern you, then they aren't going to be open with you about their illness. They will stay silent to protect themselves from you.
And the kicker?
Chronic illness can hit anyone. ANYONE.
I was eating healthy, exercising, sleeping well and long at night, and generally taking pretty good care of myself. That didn't stop me from having arthritis and my gall bladder failing, both of which I have a genetic disposition for. That didn't stop me from suffering from extreme fatigue so bad that I couldn't move or speak some days.
THAT is why I care. People can't always control the trials that come to them. People don't always get to live the perfect life expected of a certain demographic.
Hardships can happen to anyone, and that deserves compassion. One person can struggle with something fundamentally easy for someone else, and that deserves compassion. Someone can go from the top of the world to the bottom of a ditch in a moment, and that deserves compassion.
But even without all of that, you don't need to experience something for yourself to be considerate of other people. Empathy is a real thing, a good thing, and something that we need more of. Just because you don't experience something, and you might never experience that thing, doesn't mean that you can't be understanding and compassionate anyway. We are all people. We all struggle on this Mother Earth. Other peoples' problems might not be your problems, but that doesn't automatically make them less real than yours.
It hurts zero people to care, even if it gives you no personal benefits. It only helps people when you show understanding for where they're coming from.
So don't question why someone cares. It's enough that they DO care, even if it "has nothing to do with them." The world needs more compassion, not less. The world needs more understanding, not ignorance.
I care because I can.
Cheers~
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
. . . someone asked me a question that really got me going, so I decided to post on that. I may still get that other post done this week. If not, it will for sure be the post for next week! My apologies!
On a topic pretty different from this one, I got into an argument with a person and they asked me, "Why do you care?" To them, I fit into the perfect demographic where I wouldn't have to worry about what the topic was about. Why should I care, then, about people who are apparent outliers from the perfect demographic?
Why should anyone care, if it doesn't apply to them?
What an arrogant question! To think that you are the only group of people to matter, that your experiences are the only ones that matter because the struggles of other people don't apply to you! That right there is privilege in action.
I'm not here to go into Privilege as a topic, but I want to talk about how people should care, or at least why *I* care, about the topic of chronic illness. Even if it doesn't apply to you.
My Story
While I have always had food allergies and have a lengthy history of getting ill from common viruses, and have had asthma since high school, growing up I was still mostly able. I couldn't keep up with the more athletic people, but I still did fairly well for myself. In college, especially, my health was really great. I was eating right, exercising, and actually getting a decent amount of sleep regularly. I am a fiercely independent person and love being able to take care of myself and my affairs.
When I got home from college, I single-handedly took over cooking dinner and cleaning for my entire family.
Then I went on a mission for the church I belong too. While it was an amazing experience, it also killed my health. Arthritis and gall bladder failure have made a mess of my body. For the last three and a half years, I have no longer been "able."
I won't bore you with all the details of my illness, but I will say that it has been an incredibly eye-opening experience.
Illness can strike anytime, anywhere.
Your life can change in a month, in a day, in a moment.
There are some things in life that you can't work harder to overcome.
Even doing everything right for your body, your body can still fail on you.
Placing blame does nobody any good when it comes to chronic illnesses.
Chronic illness doesn't just affect you.
When you or someone close to you gets chronically ill, it changes a lot of things. I came home from my mission only able to do the most basic things. Everything made me hurt or made me ill. "Taking care of" myself did nothing to alleviate my systems. It took months for them to diagnose my symptoms correctly, and my body became so messed up that I'm still not recovered.
It affected my family. My mom had to cover all of my expenses. I couldn't work, I couldn't go to school, I could barely drive (many days, I couldn't drive at all). Light stresses tanked me.
It affected my relationships. I couldn't go on dates. Living in perpetual brain fog made it difficult to reply to my friends and keep relationships going. I always had to cancel plans because I ended up being too ill to go after all. People stopped asking me to join them because they figured they were just bothering me. I was so, so lonely.
It affects my marriage. Not many people would have been brave enough to marry someone with chronic illness. My husband is a gem for taking on the entirety of the financial burden of being married to me, as well as taking the emotional and physical burden of taking care of someone chronically ill.
Being chronically ill isn't a one-person problem. It involves a lot of people. You probably know several people who are chronically ill, but if you tell people that that doesn't concern you, then they aren't going to be open with you about their illness. They will stay silent to protect themselves from you.
And the kicker?
Chronic illness can hit anyone. ANYONE.
I was eating healthy, exercising, sleeping well and long at night, and generally taking pretty good care of myself. That didn't stop me from having arthritis and my gall bladder failing, both of which I have a genetic disposition for. That didn't stop me from suffering from extreme fatigue so bad that I couldn't move or speak some days.
THAT is why I care. People can't always control the trials that come to them. People don't always get to live the perfect life expected of a certain demographic.
Hardships can happen to anyone, and that deserves compassion. One person can struggle with something fundamentally easy for someone else, and that deserves compassion. Someone can go from the top of the world to the bottom of a ditch in a moment, and that deserves compassion.
But even without all of that, you don't need to experience something for yourself to be considerate of other people. Empathy is a real thing, a good thing, and something that we need more of. Just because you don't experience something, and you might never experience that thing, doesn't mean that you can't be understanding and compassionate anyway. We are all people. We all struggle on this Mother Earth. Other peoples' problems might not be your problems, but that doesn't automatically make them less real than yours.
It hurts zero people to care, even if it gives you no personal benefits. It only helps people when you show understanding for where they're coming from.
So don't question why someone cares. It's enough that they DO care, even if it "has nothing to do with them." The world needs more compassion, not less. The world needs more understanding, not ignorance.
I care because I can.
Cheers~
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
Friday, November 22, 2019
How Can I Help My Friends with Chronic Illness?
In my last two posts, I went over some of the many reasons why chronically ill people don't ask for help. After reading this rather disheartening list, you may be asking yourself, "Well what can I do if my friend doesn't ask for help?" It's a completely valid question!
The first thing you should know is that everybody is different. When our chronic illnesses flare up, we tend to be even more different. As mentioned previously, even people with the same chronic illness can experience it so differently because their bodies and environments, and their very own selves, are different. Everybody's needs are gonna be different, which means you will help each of your friends differently.
But don't despair!
There are still plenty of things you can do that are fairly consistent from person to person!
1. Listen
The first thing you should know is that everybody is different. When our chronic illnesses flare up, we tend to be even more different. As mentioned previously, even people with the same chronic illness can experience it so differently because their bodies and environments, and their very own selves, are different. Everybody's needs are gonna be different, which means you will help each of your friends differently.
But don't despair!
There are still plenty of things you can do that are fairly consistent from person to person!
1. Listen
Listening is one of the best things you can do in ANY relationship, let alone ones with your chronically ill friends. Listening is more than just absorbing someone's voice into your ear drums; it's actively paying attention to the words, expressions, and emotions being directed toward you from someone else. Listening involves letting go of the things YOU want to say so that you can give your complete focus to what the other person is saying. Listening is reserving judgment until the other person has finished speaking and is ready for your input, if that is what they need/desire.
Some people with chronic illness are chronic talkers about their problems. They like to air our their challenges and basically wear them like a badge of honor, or a way to have distinction. That can be really difficult to deal with. However, most of your chronically ill friends aren't like that. Most of us don't often talk about our problems, or at least not in a way that is deep and discusses our needs.
So listen. Dig deep. Instead of just listening about our problems, listen for our fears, concerns, and desires. That's where our needs are. Sometimes we need comfort, sometimes we need willing hands to lighten our loads, sometimes we need a sounding board for our problems so we can figure things out on our own. Just listen.
2. Look
A lot of times, you can figure out what someone needs just by opening your eyes. Do they seem exhausted? In pain? Anxious? While not all emotional illnesses are visible, some of them are. We tend to know our friends better than we think we do. We are familiar with their idiosyncrasies and the atmospheres around them. Instinctively, we can often feel if something is off. Trust that. Really look at your friends.
If they are comfortable having you in their homes, take a look around. Are there dishes sitting by the sink? Are their children running around without much supervision and your friend is too fatigued to chase them down? Do some of the rooms look like they could use some sprucing up? Does their fridge or pantry look frighteningly barren? Are their clothes looking shabby?
Chronic illness is always accompanied by physical signs of distress, even if they aren't visible on the person themselves.
Read that again.
Being chronically ill means that some things slip through the cracks of the day-to-day grind. That means there will always be something to find. Even if it's small. Look for those things.
3. Learn About Their Illness
Listening is a HUGE part of this, but not necessarily the only part. We tend to be experts about our own illnesses because a) we are personally experiencing them and b) we do a lot of our own research, either from doctors or at-home study. Listening to us is a great way to learn about our illnesses, but I would also invite you to do your own research, too! Find blogs of people who share illnesses with your friends, ask other friends, Google it. Don't leave explanation to us alone! It is actually exhausting to have to spell things out to people every time. Research it yourself, and you will be much better prepared to handle the challenges of helping your friends.
If your friends have fairly unique conditions that don't have an official title or a lot of research, check out some of the symptoms your friend is experiencing. Even without knowing about the main problems, being able to assist in symptom maintenance is very helpful. Example, if a person suffers from fibromyalgia (which is getting more common and having more studies done about it, but still not very well known), you could look up things about fatigue or whole body pain to better understand what your friend is going through. If it's something like a food intolerance, you can look up different things that that food appears in.
There is SO MUCH information that goes into many chronic illnesses. We by no means expect our friends and families to become experts about our problems, but it is extremely nice and helpful to not have to start at zero every time we're discussing our illnesses with people.
4. Be Flexible
This may not always be possible depending on the plans you make, or the expectations you have, but it is necessary to practice when having a relationship with someone who is chronically ill.
We cancel plans . . . a lot. Our bodies and minds are not always predictable. If it's frustrating for you, imagine how much more frustrating it is for the person who can never be sure of any plans ever of working out because of health concerns. For you, it's maybe one or two things that can be iffy in planning. For them, it's everything.
We realize that not everything can be flexible. We will have many missed opportunities. There will be memories that won't be made. But please, if you can be flexible, do. It makes a world of difference to us knowing that there's one less thing we have to be anxious about. (Anxiety, by the way, worsens pretty much every chronic illness ever. Helping lessen anxiety is one of the best ways you can help your chronically ill friends.)
5. Be Patient
Trust me when I say that we lose patience with ourselves far harder and faster than you can lose patience with us. We hate being ill. We hate not being able to do things. We are learning patience with ourselves and learning what our needs are. One thing you can do to help us is demonstrate patience with us.
For me, personally, my husband's patience is one of the most healing things he does with me. He is one of the most patient people I know, and it always helps. Knowing that I don't have to fret (I tend to anyway, but I don't actually have to around him) is freeing. I don't have to wonder that I'm too much or being too crazy in my illness. He just walks through it with me.
I'm so grateful, and I love him so much for it.
6. Don't Judge How Bad it Is by How Good it Can Be
Not all of us are super ill all the time. It can come and go. Sometimes, we can have amazing days where we accomplish everything that we need to, we're social, we're vibrant, and it seems like we could keep going forever.
Don't judge us by those days.
Those days are the sun rays slashing out from an overcast sky. Eventually, the clouds will come again. And while those good days can be really, really good, our bad days can still be really, really bad. And those bad days tend to last longer and affect us more than those good days.
Even when we have a lot of good days in a row, it doesn't mean our illness isn't as serious as we say it is. I can have a month of awesome days and then fall right back into weeks of awful days. Other chronically ill people can share similar experiences.
Good days don't erase the bad ones.
7. Don't Try to Fix Everything
There's a hard truth to chronic illnesses: they can't always be fixed. You can't always make it better.
Take it one day at a time. Helping someone with chronic illness is a lesson in perseverance. You'll get discouraged sometimes. You may think you're making things worse. It may seem like there isn't a point in continuing.
Remember that the person or people you're helping are also taking it one step at a time. Every little thing you do is helpful. Every little thing you do helps the person in need. I cannot stress enough how alone and vulnerable we feel EVERY. SINGLE. DAY. Knowing that you are there to help even in just one way is life saving. We don't expect you to solve all of our problems, so don't expect it of yourself. Just be there for us.
8. Don't Try to Do Everything Yourself
You know how people say it takes a village to raise a child? Well, chronically ill people feel like we're babies: we're in need of so much but can do so very little ourselves. It is not healthy, nor physically possible, for one person to handle all the needs of a chronically ill person.
It is way too easy to fall in to toxic relationships by always being the ONLY person your chronically ill friend or friends turn to for help. Setting boundaries is okay! Helping your friend(s) seek other help is okay! If your ill loved ones don't accept the help of other people, that is on them. It is not actually up to you to figure out all the needs of one person.
Even as a married person, I recognize that my husband is not able to be the sole provider of my needs when I'm ill. He has work and school and his own concerns. It is not physically or emotionally possible for him to be here all the time to help me when my illness flares up. It is SO very important to have other friends and family to turn to when help is needed.
Don't take the whole burden on yourself. In the end, it will only hurt you and the people you're trying to help.
And so . . .
Dealing with chronic illness isn't easy for anyone involved, but you CAN help!
These skills don't come overnight. They take time. Not only is it important to have patience with those who are ill, it is important to have patience with yourself as you learn the things you need to learn to help other people. It takes time to create your toolkit for helping the chronically ill. But taking that time is eternally worth it.
Healing takes love: loving yourself and other people. The biggest way you can help your friends is to love them. Really, truly love them. Take the time for them. Be there for them. Find ways for them to get the help they need, from you or from other people. Encourage them. Keep walking with them, no matter how long the road may seem.
I love my friends and family who have helped me on my journey. I have learned so much from them as I've watched how they have helped me, and it's given me the courage to seek how to help others.
So take heart! You really can help your friends! May your efforts to help be met with good fruits, and may you have the capacity to learn and love. 💙
Cheers~
Friday, November 15, 2019
Why Your Chronically Ill Friends Don't Ask for Help, Part II
If you missed my first post about "Why Your Chronically Ill Friends Don't Ask for Help," be sure to check it out! All links will be posted at the bottom of the page!
Since I published the first post, more ideas have come up on this particular topic. So here we go!
10. Some of Us Used to Be Able
You may think of chronic illness as something that was always there, but not so. For a good chunk of people, chronic illness only began setting in later in life. Which means a lot of us were used to living fairly normal lives before the illness hit. That makes it extra difficult when asking for help because we used to be able to do the things we now need help with. Sometimes we still haven't come to grips with our inability to do or handle things. It takes extra TLC to handle those particular changes.
11. We Know We Need Help . . . but We Don't Know with What
You can laugh if you want to, but it's true. We don't always know what we need help with, or what we most need help with. It's overwhelming thinking about all the things we need to do but can't, and it's hard to know what to get other people to help with us. And then, there are also some things that we have to care of ourselves. It can be tricky to know where to draw the lines.
12. We Don't Feel like Ourselves
We live in a fog that comes and goes, that drifts and blows. We get cranky, anxious, depressed, manic--and we don't feel like other people will want to deal with that. We don't want to deal with it ourselves. It's hard exposing yourself and your raw, ill emotions to other people. We know these emotions aren't who we are, that our illness isn't who we are, but it feels like that's all that's left of us. Because of that, it's difficult to feel up to asking anyone to help. We don't want to deal with it, and we don't expect anyone else to want to deal with it.
13. It's Hard Handing Over the Reigns
This one is one that some of us can probably learn to get over, but anyone with anxiety can tell you that the struggle is SUPER real. When you're sick, you generally want familiar, comforting things around you. Things need to be a certain way in order for you to rest.
Inviting someone else into your home to clean or keep you company or whatever else you need upsets that balance. Personally, I even struggle having my husband or the sister who lives with us take care of things when I'm ill. Even though they're the closest people to me, they still can't get everything exactly the way I like it. When I'm feeling less ill, that's not a problem. But when the illness flares up, it can be really anxietous to let other people take care of things, even when I need them to.
14. We're Embarrassed about Our Living Situation
Chronically ill people don't always live in great circumstances. Being ill takes a lot of money, which, as mentioned in my previous post, is difficult to obtain. Government assistance only goes so far, family assistance only goes so far, and working isn't always possible. So we're often really poor, and it makes it extra difficult because we feel the sting of poverty too sharply when other people are over.
Aside from the financial part, though, there's also the fact that our homes, and we ourselves, are not always clean. Hygiene and home care are really difficult to maintain when you feel like actual garbage that's been run through the blender. Yes, that is the very reason why we need help, but it also puts a barrier on us asking for help. We don't want our friends to be disgusted with us and not want to be around us.
15. We Don't Know How to Repay You
Most of the people we know probably wouldn't ask for anything in return for the help we're given, but we still feel an obligation to repay the kindness that's shown to us. That's normal, right? To give back once you've been given?
We worry that people will ask us to actually pay them, when we don't have the money; or that they'll want a favor in return, when we can't return the favor. Feeling obligated is a hard feeling to get over or work through, especially when we've been given so much by so many people. Thanking people feels like weak recompense for tackling that mountain of dishes or making sure our kid(s) doesn't die for a number of hours or days. We WANT to repay you for your help. We just worry that we can't . . . ever.
And so . . .
I encourage those of you who are well to talk to your friends with chronic illness and listen and watch for what their needs are. Some needs are less obvious than others, but I promise that if you take the time and energy to look after your ill friends, even just a little, you will have our hearts and friendship forever. And whenever we do have more health/time/energy ourselves, we will do whatever we can to pay you back or pay it forward. We can be especially good at listening, since that's the most of what we can do some days, so feel free to talk to us back when we're up for it!
We are often really lonely, and knowing that someone is there for us without us begging is SO meaningful for us. We know we can be a burden. We know we're not always easy to deal with because our brains and bodies don't work right, but we're trying. We are honestly trying.
We love life. We also want to live it the best that we can, even if it means living it differently than how you think we should. Please be patient with us and remember that, even though we're ill, we have very real feelings, just like you do.
Fam, I love you. I love the stories of people who have helped others or received help from others. So, please, share your positive experiences of giving and receiving help! I want to hear them. Let's make the world a little bit brighter one post at a time.
Cheers~
Here's the previous post: https://rosewindjulia.blogspot.com/2019/11/why-your-chronically-ill-friends-dont.html
Also be sure to check out my patreon! Patrons will have the opportunity to read my blog posts before everyone else will, give feedback, and make suggestions for future posts! https://www.patreon.com/rosejulia
And check out the music my hubby is making by checking out our FaceBook page Rosewind Talent Hub!
Since I published the first post, more ideas have come up on this particular topic. So here we go!
10. Some of Us Used to Be Able
You may think of chronic illness as something that was always there, but not so. For a good chunk of people, chronic illness only began setting in later in life. Which means a lot of us were used to living fairly normal lives before the illness hit. That makes it extra difficult when asking for help because we used to be able to do the things we now need help with. Sometimes we still haven't come to grips with our inability to do or handle things. It takes extra TLC to handle those particular changes.
11. We Know We Need Help . . . but We Don't Know with What
You can laugh if you want to, but it's true. We don't always know what we need help with, or what we most need help with. It's overwhelming thinking about all the things we need to do but can't, and it's hard to know what to get other people to help with us. And then, there are also some things that we have to care of ourselves. It can be tricky to know where to draw the lines.
12. We Don't Feel like Ourselves
We live in a fog that comes and goes, that drifts and blows. We get cranky, anxious, depressed, manic--and we don't feel like other people will want to deal with that. We don't want to deal with it ourselves. It's hard exposing yourself and your raw, ill emotions to other people. We know these emotions aren't who we are, that our illness isn't who we are, but it feels like that's all that's left of us. Because of that, it's difficult to feel up to asking anyone to help. We don't want to deal with it, and we don't expect anyone else to want to deal with it.
13. It's Hard Handing Over the Reigns
This one is one that some of us can probably learn to get over, but anyone with anxiety can tell you that the struggle is SUPER real. When you're sick, you generally want familiar, comforting things around you. Things need to be a certain way in order for you to rest.
Inviting someone else into your home to clean or keep you company or whatever else you need upsets that balance. Personally, I even struggle having my husband or the sister who lives with us take care of things when I'm ill. Even though they're the closest people to me, they still can't get everything exactly the way I like it. When I'm feeling less ill, that's not a problem. But when the illness flares up, it can be really anxietous to let other people take care of things, even when I need them to.
14. We're Embarrassed about Our Living Situation
Chronically ill people don't always live in great circumstances. Being ill takes a lot of money, which, as mentioned in my previous post, is difficult to obtain. Government assistance only goes so far, family assistance only goes so far, and working isn't always possible. So we're often really poor, and it makes it extra difficult because we feel the sting of poverty too sharply when other people are over.
Aside from the financial part, though, there's also the fact that our homes, and we ourselves, are not always clean. Hygiene and home care are really difficult to maintain when you feel like actual garbage that's been run through the blender. Yes, that is the very reason why we need help, but it also puts a barrier on us asking for help. We don't want our friends to be disgusted with us and not want to be around us.
15. We Don't Know How to Repay You
Most of the people we know probably wouldn't ask for anything in return for the help we're given, but we still feel an obligation to repay the kindness that's shown to us. That's normal, right? To give back once you've been given?
We worry that people will ask us to actually pay them, when we don't have the money; or that they'll want a favor in return, when we can't return the favor. Feeling obligated is a hard feeling to get over or work through, especially when we've been given so much by so many people. Thanking people feels like weak recompense for tackling that mountain of dishes or making sure our kid(s) doesn't die for a number of hours or days. We WANT to repay you for your help. We just worry that we can't . . . ever.
And so . . .
I encourage those of you who are well to talk to your friends with chronic illness and listen and watch for what their needs are. Some needs are less obvious than others, but I promise that if you take the time and energy to look after your ill friends, even just a little, you will have our hearts and friendship forever. And whenever we do have more health/time/energy ourselves, we will do whatever we can to pay you back or pay it forward. We can be especially good at listening, since that's the most of what we can do some days, so feel free to talk to us back when we're up for it!
We are often really lonely, and knowing that someone is there for us without us begging is SO meaningful for us. We know we can be a burden. We know we're not always easy to deal with because our brains and bodies don't work right, but we're trying. We are honestly trying.
We love life. We also want to live it the best that we can, even if it means living it differently than how you think we should. Please be patient with us and remember that, even though we're ill, we have very real feelings, just like you do.
Fam, I love you. I love the stories of people who have helped others or received help from others. So, please, share your positive experiences of giving and receiving help! I want to hear them. Let's make the world a little bit brighter one post at a time.
Cheers~
Here's the previous post: https://rosewindjulia.blogspot.com/2019/11/why-your-chronically-ill-friends-dont.html
Also be sure to check out my patreon! Patrons will have the opportunity to read my blog posts before everyone else will, give feedback, and make suggestions for future posts! https://www.patreon.com/rosejulia
And check out the music my hubby is making by checking out our FaceBook page Rosewind Talent Hub!
Wednesday, November 6, 2019
Why Your Chronically Ill Friends Don't Ask for Help
The phrase "let me know if you need anything" is one very commonly thrown around in United States culture. It's well-meant, often sincere, and a way that people try to show that they care. Unfortunately, it also doesn't work the way it is intended. Most people who are chronically ill and really need the help don't ask for it. Here's why:
1. We Always Need Help
Chronically ill people . . . well, they always need something. Or at least, a good chunk of the time. That's one of the downsides of being chronically ill: the illness is pretty much always there, which means that the afflicted people generally always need help in some capacity or another. There is always a need that could be met, some more obvious than others.
So if chronically ill people always have a need, why don't they just say that?
2. We Don't Want to be a Burden
You ever hear those stories of really needy people who ALWAYS seem to be asking for stuff but don't ever seem to be doing anything to fix their situation? Chronically ill people don't want to be seen as one of those people. We don't want our friends and family to get tired of helping us. We don't want to wear out the help wagon, even when we literally can't get out of bed for pain/discomfort/fatigue or the other dozen ways we're suffering. It's better to do things ourselves rather than risk becoming a burden.
3. We Get Turned Down . . . A Lot
People will say "let me know if you need anything," but reality is pretty different. I have personally experienced rejection MANY times when I've actually plucked up the courage to ask for help. Can you think of the number one reason why that might be?
It's time.
People may offer their help, but when it comes down to it, very few of those people actually ever feel like they have the time to help. It doesn't matter whether it's babysitting, cleaning, cooking, or just having a companion around, most people don't feel like they have time to help with any of it. Even family can be guilty of pushing off helping someone with chronic illness if it doesn't fit their schedule. They have time to offer help but not to give it.
4. Society Tells Us We're Useless
That header pretty much sums it up.
A good chunk of chronically ill people can't work, or can only work part-time hours. It's really hard, even impossible, to have a livable income with those kind of restrictions. Society tells us that if we don't work, we're just parasites feeding off the hard work of honest people.
But we're honest . . . aren't we?
Even some of the people closest to us espouse the idea that those who don't work don't deserve to eat, never dreaming that we internalize that to mean US, that they're talking about US. It makes it really difficult to ask for help from people who think we're trash, that we're not trying hard enough, or that all we need to do is change this or that in order to be well again. Chronic illness manifests in everyone so differently and takes its toll on different levels. Some of us can work with the same illness that completely wrecks others. It creates a huge hit to self-esteem and self-worth because not all of us can do what other people can. It makes us feel like we don't even deserve to ask for help.
We are scared of being seen as weak, unable, whiny. Because that's what society tells us we are if we constantly ask for help.
5. Our Minds and Bodies Are Our Own Worse Enemies
Asking for help actually takes more energy than you think it might. People with anxiety, depression, or fatigue can find it nearly impossible to raise up enough pluck to ask for help, even when desperate. It's exhausting trying to figure out who you can ask, when, what kind of help you need in a given moment, what to do if people turn you down. It's enough to not even want to start the process and just deal with whatever problem until it gets easier--if it gets easier. You doubt yourself. You doubt the sincerity of your loved ones. You doubt you're worthiness. Sometimes your brain shuts down before you can even pick up the phone.
Oh, yeah. I almost forgot. Even just picking up the phone can be painful/exhausting.
It's a vicious cycle.
6. People Don't Think We're Ill
"But you look healthy" is one of my least favorite phrases to hear from, well, anyone. I have had friends and doctors alike dismiss how I'm feeling by how I'm looking. It is hard as all get out to get people to believe in something they can't see, including our illnesses. Most chronic illnesses CAN'T be seen, except maybe by some of the side symptoms. Weight loss, weight gain, obvious swelling, redness, hair loss--these are all super visible signs that can signify illness, but not all of us have those signs.
Having to prove we're ill, and thus "deserving" of help, is degrading, exhausting, and discouraging. We won't ask for help if we're always demanded to prove it. People may fake being ill, but it's not as common as media and government would have you think. Let me tell you, faking the kind of problems I have would waste way more energy than I could fathom.
7. We Don't Want a Lecture
You know what DOESN'T help someone with chronic illness? Telling them the million and one things they could do differently. Trust me, we've already heard them all. From diet, to sleep, to CBD, to essential oils, to acupuncture, exercise, going outside more, attitude, getting government help, getting help from other family, and on and on and on.
It's overwhelming. And scary. And frustrating.
We don't like asking for help because we don't want to hear it . . . again. Some of these things really work, and some of them don't. Chances are, we've tried a lot of them. Sometimes we're taking a break between new therapies.
Ultimately, a lecture is NOT what we need by way of help.
8. The Other People We Trust Are Also Ill
It's true that you attract people with similar interests, tastes, and chronic health problems. A lot of us don't ask for help because the people we WOULD turn to are also ill, and we don't want to overburden them. Having a mutually-ill support group is great!
Until we're all too ill to help each other.
9. Some of Our Problems Are Really Weird
Again, the header kind of sums it up. Some of us really hate having to explain the specific reasons of why we're asking for help. And this is different from not wanting to prove we're sick. Even with people who believe that we're ill, it can be awkward to have to explain the details of what's wrong. We don't want to put ourselves in an embarrassing conversation. It's sometimes easier to just avoid it altogether.
And so . . .
I'm not here to tell you what to do with this information. I also struggle with figuring out how to help other people even when I feel awful. What you do is up to you. You know your friends. It's not always easy to figure out what someone else's needs are, especially if those needs are internal needs, not external needs. But it's worth it to try.
There's a talk I love by a previous President of the Church of Jesus Christ of Latter-day Saints that addresses this topic. It was given by President Monson in October 2001. President Monson says,
"Let us ask ourselves the questions: “Have I done any good in the world today? Have I helped anyone in need?” What a formula for happiness! What a prescription for contentment, for inner peace—to have inspired gratitude in another human being.
Don't wait for your friends and loved ones to ask for help. Offer it! Let them know you are sincere by how you treat them, not just by what you say. If you really want to help, take the burden of asking for help off their shoulders. Sometimes even just that is lifesaving.
I hope that this will help people understand their chronically ill loved ones better, and I hope it helps you who are chronically ill feel seen. I see you, fam. 💓 I know the struggle to ask for help. I feel it almost every day. All I can offer you are the words "Keep going." There are people out there who love you, who care for you, who are rooting for you. Healing may never come, but the burden CAN become lighter or easier as you go. You can still be you. You can find yourself again. You can find a new self that is NOT your illness.
You have worth.
You have value.
You are still beautiful.
And know that at least this sicko loves you. 💓
Cheers~
Here's the link to the talk, for anyone interested: https://www.churchofjesuschrist.org/study/general-conference/2001/10/now-is-the-time?para=p12-p14&lang=eng
Also, if anyone wants to send me other reasons why they don't like asking for help, I will add them and expound them, either in this post or in a part II.
1. We Always Need Help
Chronically ill people . . . well, they always need something. Or at least, a good chunk of the time. That's one of the downsides of being chronically ill: the illness is pretty much always there, which means that the afflicted people generally always need help in some capacity or another. There is always a need that could be met, some more obvious than others.
So if chronically ill people always have a need, why don't they just say that?
2. We Don't Want to be a Burden
You ever hear those stories of really needy people who ALWAYS seem to be asking for stuff but don't ever seem to be doing anything to fix their situation? Chronically ill people don't want to be seen as one of those people. We don't want our friends and family to get tired of helping us. We don't want to wear out the help wagon, even when we literally can't get out of bed for pain/discomfort/fatigue or the other dozen ways we're suffering. It's better to do things ourselves rather than risk becoming a burden.
3. We Get Turned Down . . . A Lot
People will say "let me know if you need anything," but reality is pretty different. I have personally experienced rejection MANY times when I've actually plucked up the courage to ask for help. Can you think of the number one reason why that might be?
It's time.
People may offer their help, but when it comes down to it, very few of those people actually ever feel like they have the time to help. It doesn't matter whether it's babysitting, cleaning, cooking, or just having a companion around, most people don't feel like they have time to help with any of it. Even family can be guilty of pushing off helping someone with chronic illness if it doesn't fit their schedule. They have time to offer help but not to give it.
4. Society Tells Us We're Useless
That header pretty much sums it up.
A good chunk of chronically ill people can't work, or can only work part-time hours. It's really hard, even impossible, to have a livable income with those kind of restrictions. Society tells us that if we don't work, we're just parasites feeding off the hard work of honest people.
But we're honest . . . aren't we?
Even some of the people closest to us espouse the idea that those who don't work don't deserve to eat, never dreaming that we internalize that to mean US, that they're talking about US. It makes it really difficult to ask for help from people who think we're trash, that we're not trying hard enough, or that all we need to do is change this or that in order to be well again. Chronic illness manifests in everyone so differently and takes its toll on different levels. Some of us can work with the same illness that completely wrecks others. It creates a huge hit to self-esteem and self-worth because not all of us can do what other people can. It makes us feel like we don't even deserve to ask for help.
We are scared of being seen as weak, unable, whiny. Because that's what society tells us we are if we constantly ask for help.
5. Our Minds and Bodies Are Our Own Worse Enemies
Asking for help actually takes more energy than you think it might. People with anxiety, depression, or fatigue can find it nearly impossible to raise up enough pluck to ask for help, even when desperate. It's exhausting trying to figure out who you can ask, when, what kind of help you need in a given moment, what to do if people turn you down. It's enough to not even want to start the process and just deal with whatever problem until it gets easier--if it gets easier. You doubt yourself. You doubt the sincerity of your loved ones. You doubt you're worthiness. Sometimes your brain shuts down before you can even pick up the phone.
Oh, yeah. I almost forgot. Even just picking up the phone can be painful/exhausting.
It's a vicious cycle.
6. People Don't Think We're Ill
"But you look healthy" is one of my least favorite phrases to hear from, well, anyone. I have had friends and doctors alike dismiss how I'm feeling by how I'm looking. It is hard as all get out to get people to believe in something they can't see, including our illnesses. Most chronic illnesses CAN'T be seen, except maybe by some of the side symptoms. Weight loss, weight gain, obvious swelling, redness, hair loss--these are all super visible signs that can signify illness, but not all of us have those signs.
Having to prove we're ill, and thus "deserving" of help, is degrading, exhausting, and discouraging. We won't ask for help if we're always demanded to prove it. People may fake being ill, but it's not as common as media and government would have you think. Let me tell you, faking the kind of problems I have would waste way more energy than I could fathom.
7. We Don't Want a Lecture
You know what DOESN'T help someone with chronic illness? Telling them the million and one things they could do differently. Trust me, we've already heard them all. From diet, to sleep, to CBD, to essential oils, to acupuncture, exercise, going outside more, attitude, getting government help, getting help from other family, and on and on and on.
It's overwhelming. And scary. And frustrating.
We don't like asking for help because we don't want to hear it . . . again. Some of these things really work, and some of them don't. Chances are, we've tried a lot of them. Sometimes we're taking a break between new therapies.
Ultimately, a lecture is NOT what we need by way of help.
8. The Other People We Trust Are Also Ill
It's true that you attract people with similar interests, tastes, and chronic health problems. A lot of us don't ask for help because the people we WOULD turn to are also ill, and we don't want to overburden them. Having a mutually-ill support group is great!
Until we're all too ill to help each other.
9. Some of Our Problems Are Really Weird
Again, the header kind of sums it up. Some of us really hate having to explain the specific reasons of why we're asking for help. And this is different from not wanting to prove we're sick. Even with people who believe that we're ill, it can be awkward to have to explain the details of what's wrong. We don't want to put ourselves in an embarrassing conversation. It's sometimes easier to just avoid it altogether.
And so . . .
I'm not here to tell you what to do with this information. I also struggle with figuring out how to help other people even when I feel awful. What you do is up to you. You know your friends. It's not always easy to figure out what someone else's needs are, especially if those needs are internal needs, not external needs. But it's worth it to try.
There's a talk I love by a previous President of the Church of Jesus Christ of Latter-day Saints that addresses this topic. It was given by President Monson in October 2001. President Monson says,
"Let us ask ourselves the questions: “Have I done any good in the world today? Have I helped anyone in need?” What a formula for happiness! What a prescription for contentment, for inner peace—to have inspired gratitude in another human being.
Our opportunities to give of ourselves are indeed limitless, but they are also perishable. There are hearts to gladden. There are kind words to say. There are gifts to be given. There are deeds to be done. There are souls to be saved. . . .
My brothers and sisters, may we resolve from this day forward to fill our hearts with love. May we go the extra mile to include in our lives any who are lonely or downhearted or who are suffering in any way. May we '[cheer] up the sad and [make] someone feel glad.'11 May we live so that when that final summons is heard, we may have no serious regrets, no unfinished business, but will be able to say with the Apostle Paul, 'I have fought a good fight, I have finished my course, I have kept the faith.'"
Don't wait for your friends and loved ones to ask for help. Offer it! Let them know you are sincere by how you treat them, not just by what you say. If you really want to help, take the burden of asking for help off their shoulders. Sometimes even just that is lifesaving.
I hope that this will help people understand their chronically ill loved ones better, and I hope it helps you who are chronically ill feel seen. I see you, fam. 💓 I know the struggle to ask for help. I feel it almost every day. All I can offer you are the words "Keep going." There are people out there who love you, who care for you, who are rooting for you. Healing may never come, but the burden CAN become lighter or easier as you go. You can still be you. You can find yourself again. You can find a new self that is NOT your illness.
You have worth.
You have value.
You are still beautiful.
And know that at least this sicko loves you. 💓
Cheers~
Here's the link to the talk, for anyone interested: https://www.churchofjesuschrist.org/study/general-conference/2001/10/now-is-the-time?para=p12-p14&lang=eng
Also, if anyone wants to send me other reasons why they don't like asking for help, I will add them and expound them, either in this post or in a part II.
Friday, July 26, 2019
Chronically Ill Mom, Part 2
After about a year after having my gallbladder out, I figured it was time to go back to a GI doctor about my intestinal problems. I still had spasms where my gallbladder used to be, and still had terribly IBS most days. I was also seriously contemplating getting a nutritionist/dietitian so I could see if a diet program would work better for me than what I was doing. On top of these decisions, we also felt that it was time for us to get pregnant.
It was scary and exciting to contemplate having a child. Scary, because initially we had planned not to try for a while longer, and because of my health. Could I safely carry a child? Would I have the energy to care for a child when he or she came? Would being pregnant help or hurt my health? Hormones had often helped my gut during my periods, but sometimes they really hurt it too. It was a toss up. I worried that my pregnancy would be a toss up.
It was exciting because, well, Stephen and I have always both loved children and often talked about our future family. It hurt some, thinking about having a family without our oldest child, but it was also nice thinking of actually being able to raise a child ourselves. There has always been mixed emotion. But excitement was still incredibly strong.
Regardless of our mixed emotions, we still felt it was the right decision. So we started trying, and I started seeing a dietitian and a new GI doctor. The GI doctor did a bunch of tests that came back negative, gave me some other gut-health pills to try, and told me good luck with getting pregnant. There wasn't anything else she could do for me. She was very sweet, though, and I feel she did her best, so I had no animosity toward her. Oh yeah, and she was also the doctor to finally just diagnose me with IBS.
My dietitian had more helpful things for me. She gave me a more comprehensive list of foods that can aggravate IBS (on which were mot of my food allergens, surprise, surprise), and had me start recording my meals. She also had me increase my calories, partially to gain weight, and partially to start preparing for the baby. Through the food journal, we eliminated a couple more foods from my diet, and I did gain a bit more energy from eating more.
Very soon after starting to see the dietitian--or maybe just before?--we got pregnant! Wow! What exciting news! I could hardly believe. I had to keep checking. It was a miracle.
We withheld the news from everyone (except my mom, since I needed her advice; sadly, my mom isn't great at secrets, so everyone living with her ended up finding out) because I was worried about miscarrying. My oldest sister miscarries a lot, so I wanted to be cautious, especially since this was my first pregnancy. Luckily, my health really was about the same the first trimester, with only a little more acid refux and only one time throwing up. Everything else was EXACTLY the same symptoms I'd already been dealing with for two years.
We announced the pregnancy at the end of the first trimester. Once I entered the second trimester, my health improved BIG time. Turns out the hormones were VERY good for my body, which is good, because we ended up moving out of our apartment during that time.
I still had quite a bit of fatigue, but I still had more usable hours to my day and was able to keep up with light exercise throughout the summer. (I got pregnant in January, and we moved at the end of May.) Steve introduced me to some video games that require thinking skills, so that helped combat my brain fog. I still couldn't push myself too hard or far, but I managed to get by. Overall, it was not that bad.
Then at the beginning of August, right around the start of my third trimester, we moved again. It was hot, humid, and miserable! And I couldn't do as much to help out since I was so far along. It was frustrating, but I got through it. We all got through it.
Now in our new place, my health started tanking again in the final stages of the pregnancy. I got a part-time job as a writing tutor, working at the EAC writing center. It was nice because it was light work and got me out of the house, where I was slowly going crazy.
I became anxious for the baby to come. October came, and so did he. Another miracle. And a tremendous blessing.
During the whole pregnancy, my fears of being able to care for my son did not cease. I was worried the whole time. What if my joints flared up and I dropped him? What if I was too fatigued and he needed me? My sister moved with us, so I at least had some support, but I desperately desired to care for him largely on my own.
I will not lie, after our baby came, things got drastically harder. I ended up having postpartum anxiety, but all the tests came back with different results, so they sent me to an endocrinologist just to verify what it was caused by. Turns out it was postpartum thyroiditis, namely hyperthyroidism. So fun on top of my other problems. I suffered from debilitating anxiety attacks and spent most of my days irritable. My sister and husband were absolutely wonderful during that whole time. They were patient and were able to care for Isaac when I couldn't. I'm so grateful.
The endo got my hyperthyroidism under control in under four months, and I am already off the medication. But I still have fatigue, IBS, and arthritic flare ups, among my other health problems that crop up.
It's funny, because I've often been told my doctors that I'm still healthy regardless of all this. But I don't feel healthy. Pretty sure I'm not in good health. But because it's difficult to pinpoint what's wrong in all of this, I guess they think it's comforting to hear that I'm healthy?
Despite the fact that all my fears have been realized since Isaac was born (namely, my inability to care for him at times), I don't regret having him. And honestly, I believe the Lord knew exactly what kind of child we needed. Isaac is a patient, happy baby who doesn't mind if mommy can't always play with him. He's pretty independent, which is helpful when my sister and Steve are at work, because I can relax or, if I'm feeling halfway decent, clean, and not worry too much about him.
My doctor here is working on getting me diagnosed with fibromyalgia and getting me to a pain specialist, and I'm seeing a wellness coach for my stomach problems, so hopefully soon I can be a more independent mommy. The hardest thing is really accepting that I can't always take care of everything, or even just take care of Isaac, and that it doesn't make me a bad wife or mother. My health may hinder me, but it doesn't define who I am. And I don't regret having a child with all of these health challenges. When something is right, it's right. Isaac keeps me going when I'd otherwise sink into depression. He brightens my world and keeps me from being lonely when Steve is gone.
So I keep plugging on, because that's all I can do. And I hope that I can get my health troubles managed so that my boy, and other children that come along, can have a working mom instead of a banged up one. But if my health never improves, we'll work through it and I'll love my kids as best as I can. Because that's what a mom does.
Cheers~
It was scary and exciting to contemplate having a child. Scary, because initially we had planned not to try for a while longer, and because of my health. Could I safely carry a child? Would I have the energy to care for a child when he or she came? Would being pregnant help or hurt my health? Hormones had often helped my gut during my periods, but sometimes they really hurt it too. It was a toss up. I worried that my pregnancy would be a toss up.
It was exciting because, well, Stephen and I have always both loved children and often talked about our future family. It hurt some, thinking about having a family without our oldest child, but it was also nice thinking of actually being able to raise a child ourselves. There has always been mixed emotion. But excitement was still incredibly strong.
Regardless of our mixed emotions, we still felt it was the right decision. So we started trying, and I started seeing a dietitian and a new GI doctor. The GI doctor did a bunch of tests that came back negative, gave me some other gut-health pills to try, and told me good luck with getting pregnant. There wasn't anything else she could do for me. She was very sweet, though, and I feel she did her best, so I had no animosity toward her. Oh yeah, and she was also the doctor to finally just diagnose me with IBS.
My dietitian had more helpful things for me. She gave me a more comprehensive list of foods that can aggravate IBS (on which were mot of my food allergens, surprise, surprise), and had me start recording my meals. She also had me increase my calories, partially to gain weight, and partially to start preparing for the baby. Through the food journal, we eliminated a couple more foods from my diet, and I did gain a bit more energy from eating more.
Very soon after starting to see the dietitian--or maybe just before?--we got pregnant! Wow! What exciting news! I could hardly believe. I had to keep checking. It was a miracle.
We withheld the news from everyone (except my mom, since I needed her advice; sadly, my mom isn't great at secrets, so everyone living with her ended up finding out) because I was worried about miscarrying. My oldest sister miscarries a lot, so I wanted to be cautious, especially since this was my first pregnancy. Luckily, my health really was about the same the first trimester, with only a little more acid refux and only one time throwing up. Everything else was EXACTLY the same symptoms I'd already been dealing with for two years.
We announced the pregnancy at the end of the first trimester. Once I entered the second trimester, my health improved BIG time. Turns out the hormones were VERY good for my body, which is good, because we ended up moving out of our apartment during that time.
I still had quite a bit of fatigue, but I still had more usable hours to my day and was able to keep up with light exercise throughout the summer. (I got pregnant in January, and we moved at the end of May.) Steve introduced me to some video games that require thinking skills, so that helped combat my brain fog. I still couldn't push myself too hard or far, but I managed to get by. Overall, it was not that bad.
Then at the beginning of August, right around the start of my third trimester, we moved again. It was hot, humid, and miserable! And I couldn't do as much to help out since I was so far along. It was frustrating, but I got through it. We all got through it.
Now in our new place, my health started tanking again in the final stages of the pregnancy. I got a part-time job as a writing tutor, working at the EAC writing center. It was nice because it was light work and got me out of the house, where I was slowly going crazy.
I became anxious for the baby to come. October came, and so did he. Another miracle. And a tremendous blessing.
During the whole pregnancy, my fears of being able to care for my son did not cease. I was worried the whole time. What if my joints flared up and I dropped him? What if I was too fatigued and he needed me? My sister moved with us, so I at least had some support, but I desperately desired to care for him largely on my own.
I will not lie, after our baby came, things got drastically harder. I ended up having postpartum anxiety, but all the tests came back with different results, so they sent me to an endocrinologist just to verify what it was caused by. Turns out it was postpartum thyroiditis, namely hyperthyroidism. So fun on top of my other problems. I suffered from debilitating anxiety attacks and spent most of my days irritable. My sister and husband were absolutely wonderful during that whole time. They were patient and were able to care for Isaac when I couldn't. I'm so grateful.
The endo got my hyperthyroidism under control in under four months, and I am already off the medication. But I still have fatigue, IBS, and arthritic flare ups, among my other health problems that crop up.
It's funny, because I've often been told my doctors that I'm still healthy regardless of all this. But I don't feel healthy. Pretty sure I'm not in good health. But because it's difficult to pinpoint what's wrong in all of this, I guess they think it's comforting to hear that I'm healthy?
Despite the fact that all my fears have been realized since Isaac was born (namely, my inability to care for him at times), I don't regret having him. And honestly, I believe the Lord knew exactly what kind of child we needed. Isaac is a patient, happy baby who doesn't mind if mommy can't always play with him. He's pretty independent, which is helpful when my sister and Steve are at work, because I can relax or, if I'm feeling halfway decent, clean, and not worry too much about him.
My doctor here is working on getting me diagnosed with fibromyalgia and getting me to a pain specialist, and I'm seeing a wellness coach for my stomach problems, so hopefully soon I can be a more independent mommy. The hardest thing is really accepting that I can't always take care of everything, or even just take care of Isaac, and that it doesn't make me a bad wife or mother. My health may hinder me, but it doesn't define who I am. And I don't regret having a child with all of these health challenges. When something is right, it's right. Isaac keeps me going when I'd otherwise sink into depression. He brightens my world and keeps me from being lonely when Steve is gone.
So I keep plugging on, because that's all I can do. And I hope that I can get my health troubles managed so that my boy, and other children that come along, can have a working mom instead of a banged up one. But if my health never improves, we'll work through it and I'll love my kids as best as I can. Because that's what a mom does.
Cheers~
Monday, July 15, 2019
Chronically Ill Mom
I've pretty much been ill off and on my entire life, mostly due to allergies, but also from colds and stuff. My body decided that food and pollen and dander are more evil substances than things like colds and flus. It wasn't until college that I really felt I had good health. I was eating better, for one, and I biked to school and to the post office (I got rides to the store, thankfully), so I was in pretty good shape. My food allergies didn't bother me so badly and I didn't get fatigued as often. I did still get fatigued, though.
Then I want on a mission. The first six months, my health was still pretty good. We had to exercise every morning and we did a lot of walking. That, coupled with some good meals provided by members, and I was still doing really well. Toward the end of my time with my third companion (during the end of March/beginning of April), things started getting worse. First, my knees started going. They started swelling and hurting, first my right and then my left. I ice packed them, wrapped them, and took pain meds, but nothing was really helping. Then, in my last week with that companion, we caught the stomach flu (courtesy of the Elders). My comp got over it in about three days, while it took me a week. So I got transferred with my knees in disrepair and still feeling whoozy.
The flu symptoms totally went away by the end of another week, but my knees got better. Over the course of the next three months, the pain spread down to my feet and up to my hands, back, and neck. The pain was excruciating. I couldn't move anything without hurting. The mission got me to a doctor, who got me on pain meds, and then proceeded all sorts of testing to figure out what was going on. I also got some knee braces and a loooooooooooot of aid from sympathetic members. One of the hardest things was whenever I did have an especially bad flare up and then get something to help it, the release of pain would always knock me out. So much fun.
I almost came home halfway through my mission because of it, but ended up staying out (that is a story for another time). As part of the deal for me to stay out, my mission president promised me unlimited miles on any vehicle for the rest of my mission, because walking and biking made my knees swell worse. It didn't help either that this was all happening over the summer months, so it was already hot and humid many days.
After a couple of more months, I was able to get in to see a rheumatologist. That didn't help any. She did a bunch of testing, which all came back negative, and told me she couldn't do anything for me and not to bother coming back. My joints were OBVIOUSLY swollen, still, but whatever.
Another few weeks and the mission got me into a physical therapist, to see of that would help (I had gotten writer's wrist in college, which affects the joints, and physical therapy had helped me then, so the church thought it might help me now). Transfers happened and I got moved to a place about an hour and a half away, so physical therapy always took up more than half the day. Wheeeeeee....
But it worked! The therapist worked on my legs and feet, and within a month the pain was cut in half. It was also October, so the temperature change helped a lot too. Of course, the therapy also wore me out, so I would be out of commission the day after therapy as well. (I only got to go three times because of insurance. I got an at-home program to do so I could keep up on it.)
With that being mended, you'd think that it would have been smooth sailing, right?
You'd be wrong.
I got a cold or flu like every other week all through November and repeatedly had to be told to rest (by leaders and by the Lord whenever I prayed or received a blessing). I got transferred to Ely (my first area!) again in December. That was one of the happiest days of my life, let me tell you. I loved Ely 3rd Ward, and couldn't believe the blessing it was to be sent back.
The stomach flu came around pretty soon after arriving there (thanks a lot, Elders), but then I had a month (January) that wasn't too bad for my health. I would just get achy walking around in the cold (yeah, sure it wasn't arthritis) and need to half the car blasting heat.
Then February came around and I thought the stomach flu was coming around again because I got ill in my stomach again. Then I woke up one morning and dumped my stomach in the toilet; which, the stomach flu can get pretty bad, but this was worse than any flu I'd ever had.
After some weeks of it not improving, and a doctor saying that I may need a colonoscopy to figure out what was wrong, it was decided that I should come home a transfer early so I could get taken care of. As much as I hated that thought, I also recognized that I couldn't work most days because of the constant diarrhea and accompanying nausea and headaches. So I came home.
It took eight months for the doctor to figure out what was wrong. In the meantime, I had tried going gluten free and a couple of other dietary changes, but nothing at all helped. Then, in October, they were able to diagnose it at gallbladder failure, and in November I got my gallbladder out. There wasn't anything specifically wrong with it; it was just inflamed and not working. Turns out, that's a genetic problem on my mom's side. Nearly all the women have had to get theirs out, and at young ages.
Still and yet, my health didn't get as better as hoped. I got color back in my skin, and had more usable hours to my day, but I still had severe IBS symptoms and there were several days I could barely get out of bed. "Exercise!" some helpful people would say, but anything strenuous made it worse. "Get a job!" others would say, but mental and physical strain also made it worse. "Rest," my doctors prescribed, as well as a bunch of medications that were either a) too expensive or b) didn't work. I got a pretty good GI doctor who gave me a list of foods that could be irritating my gut, so I started avoiding some of those foods, and it helped, but didn't heal me. I also would get periodic spasms where my gallbladder used to be, which were pretty debilitating.
I'd gotten married the May after my gallbladder removal. My husband is a saint:I don't know too many people who would willingly date and marry someone who could barely take care of themselves, but he did it. He worked full time, and then he would come home and take care of me. I wasn't completely useless all the time, so there is that, but I know it was still a lot for him to manage. We also had a ton of other emotional things going on during our engagement and start of our marriage (that was the period of time we were working on having our son adopted out, and we had a ton of resistance from family over everything we did). But Steve didn't give up on me. He stuck to me.
So we were married, and he'd be gone to work Mon-Fri. and I would sit at home, usually by myself, and not do a whole lot. Sometimes I was able to hang out with my family or his at their respective homes, which helped my loneliness. And some days I could do more. But many days I couldn't do much. Oh, and I also still had arthritic flair ups happen, which would also incapacitate me to varying degrees.
When a year since my gallbladder removal came around, things started shaking up for us again. But, since this post is already way long, I will save the 2nd part for another day!
Cheers!
Then I want on a mission. The first six months, my health was still pretty good. We had to exercise every morning and we did a lot of walking. That, coupled with some good meals provided by members, and I was still doing really well. Toward the end of my time with my third companion (during the end of March/beginning of April), things started getting worse. First, my knees started going. They started swelling and hurting, first my right and then my left. I ice packed them, wrapped them, and took pain meds, but nothing was really helping. Then, in my last week with that companion, we caught the stomach flu (courtesy of the Elders). My comp got over it in about three days, while it took me a week. So I got transferred with my knees in disrepair and still feeling whoozy.
The flu symptoms totally went away by the end of another week, but my knees got better. Over the course of the next three months, the pain spread down to my feet and up to my hands, back, and neck. The pain was excruciating. I couldn't move anything without hurting. The mission got me to a doctor, who got me on pain meds, and then proceeded all sorts of testing to figure out what was going on. I also got some knee braces and a loooooooooooot of aid from sympathetic members. One of the hardest things was whenever I did have an especially bad flare up and then get something to help it, the release of pain would always knock me out. So much fun.
I almost came home halfway through my mission because of it, but ended up staying out (that is a story for another time). As part of the deal for me to stay out, my mission president promised me unlimited miles on any vehicle for the rest of my mission, because walking and biking made my knees swell worse. It didn't help either that this was all happening over the summer months, so it was already hot and humid many days.
After a couple of more months, I was able to get in to see a rheumatologist. That didn't help any. She did a bunch of testing, which all came back negative, and told me she couldn't do anything for me and not to bother coming back. My joints were OBVIOUSLY swollen, still, but whatever.
Another few weeks and the mission got me into a physical therapist, to see of that would help (I had gotten writer's wrist in college, which affects the joints, and physical therapy had helped me then, so the church thought it might help me now). Transfers happened and I got moved to a place about an hour and a half away, so physical therapy always took up more than half the day. Wheeeeeee....
But it worked! The therapist worked on my legs and feet, and within a month the pain was cut in half. It was also October, so the temperature change helped a lot too. Of course, the therapy also wore me out, so I would be out of commission the day after therapy as well. (I only got to go three times because of insurance. I got an at-home program to do so I could keep up on it.)
With that being mended, you'd think that it would have been smooth sailing, right?
You'd be wrong.
I got a cold or flu like every other week all through November and repeatedly had to be told to rest (by leaders and by the Lord whenever I prayed or received a blessing). I got transferred to Ely (my first area!) again in December. That was one of the happiest days of my life, let me tell you. I loved Ely 3rd Ward, and couldn't believe the blessing it was to be sent back.
The stomach flu came around pretty soon after arriving there (thanks a lot, Elders), but then I had a month (January) that wasn't too bad for my health. I would just get achy walking around in the cold (yeah, sure it wasn't arthritis) and need to half the car blasting heat.
Then February came around and I thought the stomach flu was coming around again because I got ill in my stomach again. Then I woke up one morning and dumped my stomach in the toilet; which, the stomach flu can get pretty bad, but this was worse than any flu I'd ever had.
After some weeks of it not improving, and a doctor saying that I may need a colonoscopy to figure out what was wrong, it was decided that I should come home a transfer early so I could get taken care of. As much as I hated that thought, I also recognized that I couldn't work most days because of the constant diarrhea and accompanying nausea and headaches. So I came home.
It took eight months for the doctor to figure out what was wrong. In the meantime, I had tried going gluten free and a couple of other dietary changes, but nothing at all helped. Then, in October, they were able to diagnose it at gallbladder failure, and in November I got my gallbladder out. There wasn't anything specifically wrong with it; it was just inflamed and not working. Turns out, that's a genetic problem on my mom's side. Nearly all the women have had to get theirs out, and at young ages.
Still and yet, my health didn't get as better as hoped. I got color back in my skin, and had more usable hours to my day, but I still had severe IBS symptoms and there were several days I could barely get out of bed. "Exercise!" some helpful people would say, but anything strenuous made it worse. "Get a job!" others would say, but mental and physical strain also made it worse. "Rest," my doctors prescribed, as well as a bunch of medications that were either a) too expensive or b) didn't work. I got a pretty good GI doctor who gave me a list of foods that could be irritating my gut, so I started avoiding some of those foods, and it helped, but didn't heal me. I also would get periodic spasms where my gallbladder used to be, which were pretty debilitating.
I'd gotten married the May after my gallbladder removal. My husband is a saint:I don't know too many people who would willingly date and marry someone who could barely take care of themselves, but he did it. He worked full time, and then he would come home and take care of me. I wasn't completely useless all the time, so there is that, but I know it was still a lot for him to manage. We also had a ton of other emotional things going on during our engagement and start of our marriage (that was the period of time we were working on having our son adopted out, and we had a ton of resistance from family over everything we did). But Steve didn't give up on me. He stuck to me.
So we were married, and he'd be gone to work Mon-Fri. and I would sit at home, usually by myself, and not do a whole lot. Sometimes I was able to hang out with my family or his at their respective homes, which helped my loneliness. And some days I could do more. But many days I couldn't do much. Oh, and I also still had arthritic flair ups happen, which would also incapacitate me to varying degrees.
When a year since my gallbladder removal came around, things started shaking up for us again. But, since this post is already way long, I will save the 2nd part for another day!
Cheers!
Thursday, July 11, 2019
Guilt Gifts
Ever been in an abusive relationship, or had a fight with someone, and then that someone feels bad and decides to give you a gift to make up for it? I call those guilt gifts. They're a way to show that someone feels bad/guilty without them putting in the emotional effort of actually addressing what's wrong in the relationship. Now, some people DO talk things out when they give reparation presents, and then those aren't guilt gifts. I'd call those ice breakers that lead to reconciliation.
A guilt gift is specifically when someone realizes that they did or said something to hurt or offend you and want to shower you with gifts to prove that they still love you despite whatever it is that they did or said, or to get you to shut up about whatever you have a problem with, or to assuage their own guilty conscience and has nothing to actually do with you.
Now, you could argue that the fact that they're giving you a gift at all is very generous and really does show that they're trying to make amends. But if the person still doesn't address the source of the hurt, then it's pretty meaningless. I've been given too many guilt gifts in my life to trust them.
To me, a true desire to make amends has to involve mending the relationship, which generally takes communication and a willingness to listen without censure. Gifts, no matter how expensive or needed, can't make up for loss of trust in a relationship (unless, perhaps, your love language is gifts; then, I don't know what to tell you). And it can be frustrating, because you want to acknowledge the thoughtfulness of the gift, but you also want the actual issues addressed.
I should also probably clarify that I'm not talking about a conversation of, "Honey, you never buy me anything, or get the things we really need," followed up by a gift. I'm talking about, "What you said really hurt me, and I would like to see if we can make better communication," followed up with a gift instead of a conversation.
Armed with this knowledge, what can you do if someone hands you guilt gifts instead of addressing the actual problems in a relationship? I'm not an expert, so I can't really say. Do you accept the gifts? Do you not accept them? Do you keep trying to establish good communication? Do you leave it alone? These are really hard questions.
Personally, I'm never satisfied with guilt gifts. Yeah, they kind of feel nice because it at least says that the person recognizes that SOMETHING isn't right in what's going on, and sometimes the gifts are things that I really need, but they don't make up for lack of communication for me. To me, it feels less like the person is trying to help stitch up the bleeding gash in our relationship, and more like they're just trying to slap a band-aid on it when stitches are needed. The best way to make amends with someone is to communicate with them on THEIR level and to figure out how THEY feel loved. Otherwise, it's more about you than it is about them.
Giving me gifts doesn't tell me you listened to what I said. Actually listening to me and actively working WITH me to fix things is what tells me you listened to what I said.
If something you've said or done has hurt someone, don't just throw gifts at their heads and expect them to feel loved. Give the gifts of time and a listening ear to your loved ones. Give the gift of change. And if you can't find a middle ground to tread, maybe give the gift of space so that both of you can work things out on your own before trying again.
That's just my two cents worth on it. Cheers.
Tuesday, July 9, 2019
All About Me
Since I'm starting afresh, I figured I ought to do a bit of history of myself, just so any new readers can get a feel for who I am.
I used to tell people I am a figment of everyone's imaginations. The more people I "met" the more I spread. My reasoning was that everyone's collective imaginations was strong enough to create a mass hallucination (the mind, after all, is quite a powerful thing). There was also the fact that I don't usually go to new places alone; thus, to meet me, anyone would have to be introduced to me to accept the hallucination as real.
It was a bit complicated, and came about because I never knew what to say when people asked, "Tell us something interesting about yourself." So that's what I started saying.
Now, on the other hand, I can think of a few interesting bits about myself. Here they are in bullets (because I can):
I used to tell people I am a figment of everyone's imaginations. The more people I "met" the more I spread. My reasoning was that everyone's collective imaginations was strong enough to create a mass hallucination (the mind, after all, is quite a powerful thing). There was also the fact that I don't usually go to new places alone; thus, to meet me, anyone would have to be introduced to me to accept the hallucination as real.
It was a bit complicated, and came about because I never knew what to say when people asked, "Tell us something interesting about yourself." So that's what I started saying.
Now, on the other hand, I can think of a few interesting bits about myself. Here they are in bullets (because I can):
- I was born and raised in Arizona, but none of my siblings were born here.
- I'm the youngest of six.
- My parents have been divorced for nearly 10 years.
- I went on a mission for my church at 19. I served in the Nevada Reno mission, which takes up pretty much the entirety of the northern half of Nevada. (This is something that will probably crop up in later posts, so stay tuned!) I came home six weeks early (though that's hardly early by mission standards, it still felt early) due to illness.
- I had my gallbladder removed at the tender age of 22. This was the principal reason I came home early, and it took eight months to get the diagnosis. By that time, my gallbladder was only functioning at about 13%, and they usually take them out at 30%.
- I've been sick most of my life due to allergies and a fairly poor immune system. The last few years have been especially bad because of my gallbladder, which inflamed my system and gave me IBS. I can no longer breakdown food super well, and I had lost a ton of weight when I got home from my mission.
- Pregnancy saved my weight. My body received strength and the hormones helped my stomach. Because of that, I'm actually at a pretty healthy weight again, which is great.
- Stephen and I met in high school; he fell in love with me then, but I didn't know I loved him until I came home from my mission. Our relationship progressed pretty quickly from there. (Definitely going to have more on that later. I think our love is a fun story, and I'm dying to share it.)
- We have two sons, although one of them is technically not mine. Even though our oldest son isn't mine, I still consider him mine, and the pain of having to adopt him out is just as real as if I'd lost my own child. (I'll probably go into that more, too, but I have to be careful not to share too much in respect of his adoptive parents, who have asked that we not be too public about him. I'll probably just go into my feelings about it, when I do talk about it.)
- Our younger boy is a delight and joy, and my buddy, and I will talk about him shamelessly.
- I am a DEVOUT member of the Church of Jesus Christ of Latter-Day Saints. My faith definitely contributes to who I am, and I will speak of it freely. It shapes my views of the world and teaches me how to handle different people and situations. I won't apologize for it, so if it is a problem, I recommend something else to read.
There's probably a lot more that can be said; I think the best way to know who I am would be to just keep getting to know me. Which is something that is true for everyone.
As of right now, I am an at-home mom who's trying to regain her health and finish her Bachelor's degree in English. I plan on taking courses online so I can be home for my boy and so as to be more flexible around my husband's schedule. Honestly, I'm pretty content with that. The best career I can think of is being a wife and mother. Everything else is secondary. What I really long for is my health back, so that I can do more things. I'm an introvert and a homebody, but I have to find ways to spend my energy (when I have it) or I get restless. That's my biggest challenge. My body is weak, and sometimes my brain is too, but my spirit loves work, creativity, and things that make me grow. Sitting at home, barely being able to take care of my son some days, has been a huge trial of patience and faith.
Happily, I have found someone who thinks she can get my gut health back up, and I've started exercising again (note: it sucks because I've become so weak). It is my hope that within the next couple of months I can really get my health and energy back. You don't know how much you take just being able to move for granted until you can't move anymore. I try not to let my illness define me, but sometimes it feels like that's all there is. Stephen and Isaac keep me out of myself. They're the biggest blessings of my life.
I'm working on getting back into creative spheres. I don't like to showcase myself, but Steve says I should go out of my way more, so I'm getting back into art, writing, and the other things I love to do that I've been too sick to do since I got home three years ago. That's really nice. As one of my friends said just today, it is important to have creative outlets, especially as an at-home mom. You have to do things to recharge. So maybe some of that will end up on here. We'll see.
Anyhow, I think that's about all I've got for myself right now. I'm sure more things will come up as I go along.
Cheers~
Monday, July 8, 2019
Long Time Coming
It's been absolute ages since I touched this thing. I honestly can't even fully remember why I started a blog--I think it was probably because my oldest sister had one for her family, and I somehow ended up thinking it would be good to have one of my own. Then, of course, my author friends all have blogs or other pages around to get their books out there. I remember perusing several of their blogs and enjoying them, and I as was an aspiring author, I thought it couldn't hurt. I don't know that this will ever be that popular or exciting, but here it is.
My husband, Stephen, is the one we can blame for this sudden desire to blog again. I mean, I'd been thinking about it for a while, but his words confirmed my worst fears: I should blog again.
Why blog?
Well, it's a way to express oneself without the rapid pace of social media life. Everything on social media is flash emotions, "quick, spread the word!" and other such adrenaline addictive things. There's not as much time for reflection. And honestly, if anyone responds to these, I'd probably care less than on social media. It's not as attention grabbing, and I'm not sharing my thoughts to make a statement or start a riot. I'm just sharing some things to get them out of my head and make a mark of my life.
The last few years have been exceedingly difficult for me. I write in my journal on occasion (that's something I'm also working on improving), but I've discovered I have an easier time expressing myself if I think someone's going to read what I say. My journal is the record of my life and my emotions; this is less a stream of thoughts and more a way to articulate my life in a way that would make sense to others. At least, I hope it will make sense.
Anyway, I've been bottling a lot of things up, and I can't get out very often, so Stephen thought I ought to blog a bit. And who knows? Perhaps someone can benefit from what I have to say. That would be nice, to help others. I think that's probably at least 50% of the reason I want to write out my life stories. If I can help anybody reading this, then that's a good thing.
Perhaps, too, if I can get back to writing consistently, some of those things could wind up on here.
I can't promise this will come out in a chronological order. It probably won't, because brains don't always work like that. But it could be fun, though. It could be.
Kind of a lame post, but I figured I ought to create some kind of expectations for myself and anyone reading this. I doubt anyone will, but you never know.
So here you are, at the reboot of my blog.
Also, if you see glaring grammatical or typographical errors, you can let me know privately (my email should be available, I think) and I will fix them. As an author, I like things to be tidy. Just have some mercy, will ya?
Cheers.
My husband, Stephen, is the one we can blame for this sudden desire to blog again. I mean, I'd been thinking about it for a while, but his words confirmed my worst fears: I should blog again.
Why blog?
Well, it's a way to express oneself without the rapid pace of social media life. Everything on social media is flash emotions, "quick, spread the word!" and other such adrenaline addictive things. There's not as much time for reflection. And honestly, if anyone responds to these, I'd probably care less than on social media. It's not as attention grabbing, and I'm not sharing my thoughts to make a statement or start a riot. I'm just sharing some things to get them out of my head and make a mark of my life.
The last few years have been exceedingly difficult for me. I write in my journal on occasion (that's something I'm also working on improving), but I've discovered I have an easier time expressing myself if I think someone's going to read what I say. My journal is the record of my life and my emotions; this is less a stream of thoughts and more a way to articulate my life in a way that would make sense to others. At least, I hope it will make sense.
Anyway, I've been bottling a lot of things up, and I can't get out very often, so Stephen thought I ought to blog a bit. And who knows? Perhaps someone can benefit from what I have to say. That would be nice, to help others. I think that's probably at least 50% of the reason I want to write out my life stories. If I can help anybody reading this, then that's a good thing.
Perhaps, too, if I can get back to writing consistently, some of those things could wind up on here.
I can't promise this will come out in a chronological order. It probably won't, because brains don't always work like that. But it could be fun, though. It could be.
Kind of a lame post, but I figured I ought to create some kind of expectations for myself and anyone reading this. I doubt anyone will, but you never know.
So here you are, at the reboot of my blog.
Also, if you see glaring grammatical or typographical errors, you can let me know privately (my email should be available, I think) and I will fix them. As an author, I like things to be tidy. Just have some mercy, will ya?
Cheers.
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