What Even Are Chronic Illnesses? They Sound Made Up.

Now you might think that I should have started with a topic like this, as an introduction for people unfamiliar with chronic illnesses in general, but I find catching people's attention requires jumping into the middle sometimes before providing the back story.

There are a lot of people out there in the world who have some gross misconceptions about chronic illnesses: whether they are real, whether they are serious, how treatable they are. Let me assure you that chronic illnesses are very real, that many of them are deadly serious, and not all of them are very treatable.

So What Are Chronic Illnesses?

The National Center for Chronic Disease Prevention and Health Promotion defines chronic illnesses, or diseases, as "conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both." CDC

The US National Library of Medicine, through Medline, defines them as "a chronic illness is a long-term health condition that may not have a cure." Medline

Basically, chronic illnesses hit and then stick around. Sometimes you can treat them and go into remission, and sometimes they stick around forever. While the understanding of chronic illnesses is expanding, there is still way too much that the scientific world doesn't know about them. And they are becoming all too common in this day and age.

What Kinds of Illnesses Are We Talking About?

Here is a list (not comprehensive) of some chronic illnesses:

• Cancers
• Cardiovascular diseases, including cerebrovascular disease, heart failure, and ischemic cardiopathy
• Chronic respiratory diseases, such as asthma and chronic obstructive pulmonary disease (COPD)
• Diabetes mellitus (type 1, type 2, pre-diabetes, gestational diabetes)

Other examples of chronic diseases and health conditions include:

• Alzheimer's disease
• Atrial fibrillation
• Attention deficit hyperactivity disorder
• Autoimmune diseases, such as ulcerative colitis, lupus erythematosus, Crohn's disease, coeliac disease, Hashimoto's thyroiditis, and relapsing polychondritis
• Autism or Asperger's Syndrome
• Blindness
• Cerebral palsy (all types)
• Chronic graft-versus-host disease
• Chronic hepatitis
• Chronic kidney disease
• Chronic osteoarticular diseases, such as osteoarthritis and rheumatoid arthritis
• Chronic pain syndromes, such as post-vasectomy pain syndrome and complex regional pain syndrome
• Dermatological conditions such as atopic dermatitis and psoriasis
• Deafness and hearing impairment
• Ehlers–Danlos syndrome (various types)
• Endometriosis
• Epilepsy
• Fetal alcohol spectrum disorder
• Fibromyalgia
• HIV/AIDS
• Huntington's disease
• Hypertension
• Mental illness
• Migraines
• Multiple sclerosis
• Myalgic encephalomyelitis (a.k.a. chronic fatigue syndrome)
• Narcolepsy
• Obesity
• Osteoporosis
• Parkinson's disease
• Periodontal disease
• Polycystic Ovarian Syndrome
• Postural orthostatic tachycardia syndrome
• Sickle cell anemia and other hemoglobin disorders
• Substance Abuse Disorders
• Sleep apnea
• Thyroid disease

Also:

• Asthma
• IBS
• Food allergies

Looking at this list, you definitely know people who have one or more of these conditions. And these aren't even all the chronic illnesses that people can get. Many chronic illnesses still don't have diagnoses or proper names, but they still negatively and permanently affect peoples' lives. Many of them can be helped with dietary changes, exercise, healthy sleep patterns, and stress management. Many of them can be helped with medications. But not all.

If you take the time to look up some of these diseases (I left the links to wikipedia intact, just as a launching point into studying; definitely don't just rely on wikipedia), you will find that some commonalities exist between illnesses. Fatigue, pain, lack of sleep, memory failure, brain fog, digestive issues, and mood swings plague those with chronic illnesses. It is a completely different kind of life from the average healthy person. It can be excruciating, terrifying, and totally life altering. While many of these illnesses are preventable, many more still aren't. People can actually go from completely healthy one day to immobilized with pain or sickness the next.

It's easy to find help with some of these conditions, but some of them require medical costs that can quickly become insupportable to maintain. Sometimes it takes years to receive the right diagnosis. Sometimes one can never get medical professionals to take it seriously enough to even start getting the right help. Often, insurance won't cover your illness even with mountains of documentation.

There are so many different nuances that go into diagnosing and caring for chronic illnesses that it's exhausting for many chronically ill people to even do the research to find the right kind of medical help. Because most of us still have to work in order to provide for ourselves, we don't always have the energy to take care of our medical needs, which further drives us down the rabbit hole of poor health. It is terrifyingly easy to have our medical problems take over our lives completely.

Our current system isn't chronic illness friendly. We have to work to afford the medical bills, but because we have to work, our conditions worsen, oftentimes severely. Work also leaves less time to take care of ourselves (you know, getting that exercise in, plus shopping for good foods and getting enough sleep). It's a horrible, vicious cycle. Work places are not accommodating. Schools are not accommodating. Our own families reject us, demanding more of us than we can give.

In Conclusion

Chronic illnesses are very real.

They affect people that you, personally, know.

They don't make anyone less worthy of love and support. In fact, people with chronic illnesses need MORE love and support, not less.

The system we live in needs to change so that people with chronic illnesses don't have to destroy themselves just to live.

Take the time to study up on chronic illnesses, especially the ones that your friends and family have. See what you can do to help them out, especially when they trust you enough to be vulnerable enough to confide in you. Listen to them and their needs. And then follow through with what you tell them. Don't assume that you know how to help them better than they know how to help themselves. Just listen and love.

That's all I've got the energy for right now. I promise I'll work on getting these out more often again. Love you all!

Cheers~

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Mainstream vs. Holistic Medicine

As medical bills skyrocket and doctors are unable to provide help with the massive increase in chronic illnesses, more and more people are turning to holistic, natural medicine and therapy, or using a blend of mainstream medicine and holistic medicine. This switch is receiving a TON of backlash from both medical professionals and the common Joe on the street, because holistic medicine has, for a long time, been considered "hokey" or "unscientific." On the other hand, some medical professionals are also switching to a blend of mainstream medicine and holistic options.

Why the switch if there's so much opposition and "scientific proof" against it?

Well, maybe let's look at some pros and cons for both mainstream medicine and holistic medicine. (This is not a comprehensive list of all the pros and cons of both types of medicine, but simply a way to get people thinking about the differences and why people are making some of the choices they are making. This list is also still pertaining mostly to chronic health challenges.)

Pros of Mainstream Medicine

1. It is almost universally accepted.

Being so widespread as it is (and endorsed by our government bureaucracy) means that, when diagnoses are possible, they are more accepted by the general community of medical professionals, even if the diagnosis is incorrect. The fact of the matter is that if you get diagnosed by a holistic practitioner, it is much more difficult to have the diagnosis carry into other fields. But, if you can get a diagnosis recognized by someone in the mainstream  medical community, you are far more likely to get the medical help that you need to continue on your wellness journey.

It also means that you can get doctor's notes and have access to disability help, which are not always as easily accepted from holistic doctors.

2. For most individuals, it does have positive results.

Mainstream medicine covers a wide variety of medications, durable medical equipment, vaccinations and other preventive medicines, operations, and therapies. There's a lot of good, helpful things that come from it! Many people can get what they need just by driving over to the pharmacy or talking to their doctor to get a prescription. Because of this flexibility in resources, many people can get the results they need to carry on healthy, productive lives.

3. It is a field that is constantly growing and changing.

Yay for progress! Scientists and medical professionals are constantly seeking new answers and trying new things, with the positive outcome of being more inclusive and being able to treat more health challenges. One of the best examples of this is how much mental health help has changed over even just the last hundred years. Postpartum depression is more than just a woman "being fatigued from giving birth," learning disabilities are more than just "your child is being lazy." And things like diabetes or anemia don't have to be a death sentence anymore! The growth of mainstream medicine means that even if there aren't answers or helps for the problems you have no, down the road there could be.

4. It's regulated.

While regulation isn't always a good thing, regulation in medication can be pretty handy. Knowing exactly the strength and dosage of medication prevents overdosing and underdosing, and it's easier to modify dosages and medications as needed. Having the medications come from specific places with specific guidelines helps prevents people from tampering with the medications, which means less people dying or having other awful side effects from impure medications.

Regulations in doctors' offices are also handy because it cuts malpractice and patient abuse (it can also cut doctor abuse because abusive patients can get kicked out). Regulations also mean more accountability; people can get away with less crap than before.

5. Generic medication for most of the common illnesses can be really cost efficient.

If you are able to tolerate generic medications, they can be bank-savers. Holistic supplements and remedies, and brand-name medications, can all get pricey, so it's nice to have cheaper alternatives on hand if they work for you.

6. It's insured.

Insurance is SUPER handy when handling mainstream medicine. It cuts prices left and right and can be a powerful defense against overcharges or false charges.

7. It's easily accessed.

It is much, much easier to find mainstream doctors doing mainstream practices than it is to find good wholistic doctors, especially if you live out in the boonies.

Cons of Mainstream Medicine

1. Insurance navigation can hurt more than it helps.

Jumping through hoops to get help can not only be inconvenient, it can be life-threatening. People can go MONTHS or YEARS without getting the right help because of insurance. It's also really hard on people who switch jobs and have to go periods without insurance.

2. It can be really, really hard on the body.

While it's truly a marvel that we have so many procedures and treatments available to us, many of them are actually detrimental to other areas of our body, even while helping one area. Painkillers, for example, can destroy your stomach, liver, and kidneys if taken too much, too often. In fact, most medications can have really nasty side effects that may also need treatment, or they take a long time to reach the right adjustments. Surgeries or other operations, which are definitely necessary for many health challenges, can take a really long time to recover from, and often they give you medications to "speed the recovery" that may help in one way but could potentially be detrimental in the long run.

3. Mainstream doctors are less likely to believe you if you have unusual problems, or are prone to giving up if they can't figure out what's wrong.

I have had way too many doctors tell me that I "look healthy" and that they "can't see anything wrong," even when I haven't been able to digest food for weeks on end or have had crazy headaches. Even when my joints were ALL swollen and tender from my arthritis, because nothing showed up on the testing, I had a rheumatologist dismiss me from her office. I've also had GI doctors give up on me because my testing kept coming back negative, even though I kept dropping weight and everything I ate made me sick.

And while psychiatric medicine has improved by leaps and bounds in even just the last 20 years, many people still struggle to be taken seriously and given the help they need.

4. While knowledgeable, mainstream medicine still has plenty of gaps.

Doctors and researchers don't know everything, even when they sometimes act like they do. Which is fine, really. No one knows everything. We're all learning and growing here. But when mainstream doctors fail to provide answers, a lot of people end up going untreated. Some doctors are awesome and go the extra mile to learn more when presented with new challenges, but often they don't. Mainstream medicine also only covers the things it chooses to cover, even when evidence points to several methods of alternative medicine being effective in certain situations.

My favorite doctors are the ones who blend mainstream knowledge and alternative methods. They work.

5. Often centered more on quick fixes rather than lasting wellness.

While it's great that there is so much available from mainstream medicine, it tends to be more symptoms based rather than wellness based. Rather than focusing on changing behaviors and lifestyles to improve health, a lot of mainstream medicine focuses on taking pills or only using support items. There are, of course, exceptions to the rule (diabetes treatments, for example, generally focus on both medications and lifestyle changes), but for the most part mainstream medicine doesn't focus on making lasting changes.

Pros of Holistic Medicine

1. It's more tried and true than mainstream medicine likes to think it is.

Many holistic practices have been passed down from generation to generation and are more than just hearsay. There are journals, professional texts, and actual documentation for several of these practices. It's always a good idea to take things with a grain of salt, but if you can find actual professionals who are holistic practitioners, you may be surprised about how much sturdy knowledge they actually possess. People actually DO go to school for holistic practicing.

2. There's also a wide variety of holistic practices, which means they can also help a lot of people with a lot of problems.

There's supplements, wholesome food practices, exercise regimes, and so much more that holistic medicine offers! Holistic practitioners that also have doctors' licenses even have access to prescribing the same things that mainstream doctors can, so if your state recognizes holistic practices you don't even lose out on those things (like meds and support items).

3. It can be way easier on the body, especially for people who are extra sensitive.

Holistic medicine is nice because it doesn't come with a million additives that don't do anything except fill space. The people who create holistic pharmaceuticals tend to try really hard to have only the most essential ingredients in what they vend. One, that means you know exactly what you're taking, and two, it means you are less likely to have reactions to things.

There's also more emphasis on easing into different changes instead of doing too much all at once. Holistic practitioners can help you tailor-fit your treatments to you.

4. It's centered on behavior changes, not quick fixes.

Anyone who's studied psychology or is familiar with goal and plan setting can tell you that the most effective life changes we make are the ones that we can make habitual. Holistic medicine makes you confront your lifestyle and make changes to optimize your health. This can include your standard "eat right, sleep well, exercise daily," but it usually goes more in depth than that. A lot of holistic practices center on HOW you view your body and what you can do to create positive experiences with your body. Different things give you energy while other things drain that energy.

Focusing on behavior changes and healthy habits offers longer-term benefits than just "take some Tylenol and get a good night's sleep." While sometimes quick fixes are all you need, for people with chronic health challenges, it's the long game that gives us the most benefits.

5. Holistic medicine focuses on you as a whole, and not just your separate parts.

Many health challenges that people face come from a stacking of different stresses, not just one thing. For example, Irritable Bowel Syndrome (IBS) is most commonly attributed to being over stressed or eating certain foods. So doctors will tell you to go on an elimination diet or do things to relax, both of which are extremely helpful. But they don't necessarily address the real roots of the problem. For instance, it could be from gallbladder failure, life challenges, lack of good bacteria in the gut, lack of enzymes, something else in the body that's wrong that is being released through the gut . . . etc.

My point is that everything in the body affects everything else in the body, so it's important to be able to get the big picture when handling bodily healing.

6. They are used to strange.

Holistic practitioners don't usually get as hung up about unusual symptoms like mainstream doctors do. You are less likely to hear "I have no idea how to help you, so bye" from holistic practitioners. Many of them see it as a challenge to figure out how your individual body ticks and see how to make it right. They approach things like blood tests in a way that allows them to see the whole picture instead of only specific counts.

It is really refreshing to hear "You're not crazy. You're actually experiencing these things. Let's find out why."

Cons of Holistic Medicine


1. In most places, it isn't covered by insurance, or at least not entirely.

Insurance companies get to pick and choose what they cover. Some will cover all holistic practices, some only cover some holistic practices, and most cover none of them. That means more out of pocket expenses, often upfront. It also means the supplements come from out of pocket because they can't be covered as prescriptions through insurance.

In some places, not being covered by insurance can actually make it cheaper because the doctors can set whatever price they feel is right, but by that same token it could also be more expensive if that's how the doctors value themselves.

2. You can't always find holistic practitioners.

Because they aren't part of the popular mainstream, holistic practitioners are few and far between. The more common ones you be able to find would be massage therapists, acupuncturists, yoga instructors, or dietitians (though not all dietitians are holistic). But definitely don't just see any old holistic practitioner just because they're close to you. Just like you would for mainstream medicine, do your research and find out how good they actually are.

3. Mainstream doctors don't always believe anything you get from holistic practitioners, even if there is solid, scientific, documentation.

Mainstream doctors like to say that all holistic practices are hooey, garbage, not worth their time or talents to even consider. That makes it difficult if you've had to switch back and forth for treatments. Even if what your holistic practitioners worked, you may be up against a huge fight if you go back to a mainstream doctor with what you've been given.

4.  Society as a whole can be pretty nasty about it.

People will spit vitriol or disbelief in your face if you are open about doing holistic medicine. It can be really hard to get the support you need to keep going if the people around you don't believe that what you're doing is real and effective. That can make it hard to keep up the life changes you need in order to find wellness.

5. It isn't as regulated as mainstream medicine.

While there ARE organizations that work to regulate holistic medicines and practices, because they are generally not government recognized, it can still be difficult to make sure you are getting only what you think you're getting. The best way to handle holistic medications and supplements is to get help from a holistic professional. They can usually point you toward the more reputable brands.

And so . . .

As I said in my disclaimer at the beginning, this isn't meant to be a comprehensive list of all the pros and cons of both sides of the issue. It's only meant to be a sort of starter pack in understanding some of the differences and why people choose what they choose. I invite everyone who reads this to do their own research--on both sides of the issue. Too often we only seriously consider the side that pleases us the most. But when it comes to health, the best choices are to be open-minded and supportive, whatever someone decides. We can ALWAYS stand to learn from each other.

Once again, sorry for the delay. As winter fades, my writing should pick up again. Love you all!

Cheers~

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Insurance Doesn't Give You Much Assurance

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~

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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!

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"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~

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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

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~

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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

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