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What It’s Like Being Chronically Ill in the Time of Wellness

Real Talk

March 31, 2023

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Illustration by Brittany England

Illustration by Brittany England

by Katy Anderson

•••••

Medically Reviewed by:

Joslyn Jelinek, LCSW

•••••

by Katy Anderson

•••••

Medically Reviewed by:

Joslyn Jelinek, LCSW

•••••

Unsolicited medical advice is exhausting — and sometimes even plain rude. The wellness industry needs to wake up to the realities of living with a chronic illness.

When you’re diagnosed with a chronic illness, many people will offer advice on how to treat — or even “heal” — your illness. Well-meaning loved ones and strangers alike will hit you with suggestions such as, “Have you tried going gluten-free?” or “Maybe you should try yoga!” It’s all over social media, too. It’s hard to escape the deep clutches of wellness culture in society.

I was diagnosed with rheumatoid arthritis (RA) 5 years ago. For me, one of the most difficult parts of living with a chronic illness involves facing this onslaught of unsolicited medical advice. It can feel really aggressive.

The problem is that many people who dish out these suggestions know very little about my disease, and they certainly don’t know my medical history. I’m also not always in the mood to take the time to inform someone of all the different therapies, traditional and alternative, that I have tried. I end up feeling like I have to justify the reasons that I am still “sick” when the reality is that I live with an incurable disease.

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The business of wellness

The unregulated wellness industry is big business with a global market valued at around $4.4 trillion in 2020, according to a report by the Global Wellness Institute (GWI). Wellness can mean many things, including nutrition, fitness, and sleep, and the GWI defines it as “the active pursuit of activities, choices, and lifestyles that lead to a state of holistic health.”

But the wellness industry can feel predatory when practitioners or “influencers” tout cures to people who suffer from chronic illnesses through miracle diets, high end supplements, detoxes, essential oils, and lots more.

Once I began writing about RA, I received offers to buy programs that promised to heal chronic and autoimmune diseases. Most of them revolved around extreme diets that are almost impossible to maintain long term. Those I know that have tried these diets tend to report results in the beginning and that they are sometimes able to discover some food intolerances. But they also mention that it’s close to impossible to maintain the diet forever. Some reported losing so much weight that their doctors became very concerned.

But the wellness industry can feel predatory when practitioners or “influencers” tout cures to people who suffer from chronic illnesses through miracle diets, high end supplements, detoxes, essential oils, and lots more.

For me, most of these healing programs seem like drill camps that promise results if only I were to stop eating anything that has ever brought me joy. Living with a chronic illness is hard enough on a person’s mental health, but living a life of constant deprivation on top of the daily pain and physical challenges is downright overwhelming.

RA is a progressive disease, and there is no cure — so those who come at me touting a cure are not going to sell me on anything. This doesn’t mean I’m not trying many holistic and natural treatments on my own or that I think western medicine has it all figured out. So far, I’ve struggled to be able to tolerate the pharmaceuticals meant to treat RA. I’ve tried and failed four medications due to allergic reactions, losing fist fulls of hair, and frequent infections.

And while I’ve noticed that some foods seem to make my flares worse, no diet or supplement has changed my blood work or made my symptoms disappear. I acknowledge that others have had great success by changing their diets. That just hasn’t been my experience.

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Wellness shouldn’t be about making people feel guilty

Shortly after being diagnosed, I joined some online RA support groups, including some that focused on natural treatments. I have often been disheartened at the sometimes aggressive and even combative tone in these support groups when it comes to wellness programs, anti-inflammatory diets, and alternative approaches to treatment. “Let me know when you’re ready to feel better,” was a response to one patient who expressed concern about being able to follow a very strict diet.

The messaging seems to be that if a certain “cure” is not working, it is because a chronically ill person is not trying hard enough or somehow “doesn’t want to get better.” This is why I feel for anyone facing chronic illness in this time of wellness.

The messaging seems to be that if a certain “cure” is not working, it is because a chronically ill person is not trying hard enough or somehow “doesn’t want to get better.”

The wellness industry can sometimes feel particularly gendered, where expectations of maintaining good skin and fitness regimes in a bid for overall health overlap with beauty expectations. This can feel particularly hard-hitting when autoimmune diseases affect those medically defined as women at a rate of 2 to 1.

The reality is that just because something works for one person does not mean it will work for another. Some people have more aggressive forms of disease, whereas others may be able to reach some form of remission through diet and wellness programs alone. Every situation is unique, and a chronically ill person should never be made to feel that they somehow caused their illness or that they could heal themselves if they only tried hard enough.

Embracing all modalities of treatment

I have always been willing to try any treatment so long as it is safe and has the possibility of making me feel better. This is why I have attempted to treat my disease with pharmaceuticals, as well as many alternative and natural methods that might be advertised by the wellness industry.

So far, no treatments I have tried have put me into remission. I am still hopeful but leery of those who promise miracles and fail to understand the meaning of chronic illness.

I have tried intermittent fasting, the paleo diet, giving up gluten, giving up sugar, practicing yoga and Reiki, and so on. I’ve also tried many supplements thought to help with inflammation, such as turmeric and tart cherry, as well as many vitamins. I’ve also had rheumatology appointments and have taken prescribed medications meant to slow disease progression.

So far, no treatments I have tried have put me into remission. I am still hopeful but leery of those who promise miracles and fail to understand the meaning of chronic illness.

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Giving yourself the gift of self-compassion

I want to advocate for anyone facing chronic illness. Suffering from a chronic illness is not a personal failing, and if a new treatment isn’t working, it’s not because a patient isn’t trying hard enough. An individual knows their own body better than anyone else, and sometimes, there are no great options.

When a new treatment isn’t working for me, I try to give myself the gift of self-compassion. I set boundaries around those who make me feel badly about myself or my illness. I’ve learned that it’s OK to say “Thanks, but no thanks” to those who offer unsolicited medical advice. We are all on our own journey, and wellness means something different for everyone.

Medically reviewed on March 31, 2023

3 Sources

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About the author

Katy Anderson

Katy Anderson is a freelance writer who covers health, mental health, parenting, and relationships for publications such as Huffpost, SingleCare, PopSugar, and others. She was diagnosed with rheumatoid arthritis in 2018, and is passionate about spreading awareness and sharing her personal experiences living with this disease. Katy lives with her husband, three sons, and a jovial golden retriever who loves to remind her to stay active. You can find her on Instagram, Twitter, Facebook, and LinkedIn.

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