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~
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Friday, November 29, 2019
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.
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