On Grappling with Chronic Illness in a World That Doesn’t Believe You

The other month, I found myself sprawled across my bed, wrapped up in an adult swaddle, having a staring contest with my cat. It was the middle of the day. The sun was shining. My cat was adorable. But my eyes felt tired and my brain felt like mush and everything felt heavy. Like I was swimming through quicksand.

In fact, I’d been struggling through a whole span of days during which I could barely focus. Barely function. Some nights, I passed out at 8 p.m. Slept for 10 hours. Other nights, I struggled to fall asleep. No matter how the night went, however, I never felt well-rested in the morning.

That particular afternoon, I’d just gotten off a Zoom call with someone. Usually, I pride myself on being able to “turn things on” when I have to. I’m a socially anxious introvert with chronic depression and anxiety, but the moment I hop onto an interview call or begin to teach a yoga class, I break into a smile and I crack jokes and I do my best to make the other person’s experience as delightful as possible.

This was the first time I’d felt incapable of doing that. I was exhausted and distracted and my brain was fuzzy and it showed. I was embarrassed. And now I was ashamed, too, that I was cocooned on my bed in the middle of the day, unable to work. I was allowing myself to rest, but also felt I couldn’t justify those moments of rest. If people knew, I thought, they would just think I was lazy.

When I was young and I complained of fatigue and joint pain, my mom assumed I was lazy. Then she took me to the doctor and I tested positive for early-stage Lyme disease. Vindication!

After being treated for that, however, the exhaustion persisted. I submitted myself to so much bloodwork. So many tests. Was it the Epstein-Barr virus? Thyroid issues? Stress? So many chronic illnesses to choose from! Eventually, one doctor threw up their hands and said it was chronic fatigue syndrome. Said there was nothing we could do. It felt like a cop-out. But I stopped trying to find answers and just decided it was my normal.

But it feels worse lately.

Marginalized Folks Have Always Been Treated with Skepticism by the Medical Establishment

I’ve written briefly in the past about how our healthcare system caters specifically to men, from the research our healthcare is based upon (making white, cisgender men the norm) to the implicit gender and racial biases this engenders to the type of treatment different populations receive when they attempt to report their symptoms.

These inequities have a long-ass history. We’ve all read about the place of women and “hysteria” in our medical history. (And you should totes click that link because I’m about to over-simplify things.) Basically, as science writer Ada McVean puts it, hysteria was “the medical explanation for ‘everything that men found mysterious or unmanageable in women’ and, as time went on, the term continued to be used as a synonym for “over-emotional” or “deranged.” Women these days are still offered antidepressants if they show up at their doctor’s office complaining of some difficult-to-diagnose malady.

What you may not be as aware of is the racialized history of hysteria. Hysteria was seen as a white women’s disease, while women of color were seen as “animalistic,” a mindset that made medical experimentation upon nonwhite women seem acceptable.

These days, those within the Black community continue to have higher morbidity and mortality rates, as do other BIPOC. And while some of this can be attributed to higher rates of unemployment and under-representation in good-paying jobs that include health insurance as part of the benefits package, implicit bias plays a huge part.

In 2005, the National Academy of Medicine found that “racial and ethnic minorities receive lower-quality healthcare than white people — even when insurance status, income, age, and severity of conditions are comparable.” They went on to report that those from marginalized communities were less likely to be given appropriate cardiac care, to receive kidney dialysis or transplants, or to receive the best treatments for stroke, cancer, or AIDS. And maternal mortality rates are so high for Black women that there’s an entire week in April devoted specifically to raising awareness around this issue. This is very much due to active neglect, disbelief, and full-on discrimination against patients.

Those of other marginalized identities experience similar disparities in healthcare. Those within the LGBTQ+ community face healthcare workers without cultural competency in treating them, in addition to stigma, discrimination, and institutional bias. Meanwhile, disabled folks also carry a shared history of forced sterilization and forced institutionalization, and continue to have their body autonomy stripped away from them on the regular.

It’s Tough to Get the Treatment You Deserve When Your Chronic Illness is Invisible

This is all infuriating enough but, when someone has an invisible illness — such as chronic pain, fatigue, or a mental health disorder — it’s even more impossible to find someone who will believe you when you say you’re suffering. Especially because many of these illnesses, which often fall under the rubric of autoimmune diseases, are not well understood by the medical establishment.

Such illnesses also often come with a healthy side of frustration, guilt, and embarrassment. Because their illness cannot be seen — and because it oftentimes hasn’t even been properly diagnosed — those in their lives don’t understand just how much they’re struggling. Though friends and family may mean well, suggestions to get more rest or to try yoga and meditation — or insinuations that one’s symptoms aren’t as bad as one is making them out to be — are unbearably dismissive of that person’s lived experience. And when healthcare professionals push SSRIs or play hot potato with their patients, passing them on to the next medical practitioner, it doubles down on that invalidation.

And — surprise, surprise — marginalized populations deal with this at much higher rates. A 2019 study found that Black people aged 51–55 were 28% more likely to already have a chronic illness compared to white people of the same age, while Latinx people of the same age accumulated chronic diseases faster than white people.

Further Reading on Chronic Illness and Healthcare Inequities

Writing about this makes me so tired. And I was already tired to begin with.

So to sum all of this up, I’m going to give you a reading list.

There are so many books on this topic, and I feel as if many of them have come out in just the past few years. If you’d like to read something that will get you angry-but-informed, or that will, at the very least, make you feel seen, check out:

Sex Matters by Alyson J. McGregor

The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey

Doing Harm by Maya Dusenbery

Just Medicine by Dayna Bowen Matthew

Bodies and Barriers, edited by Adrian Shanker

Black Man in a White Coat by Damon Tweedy

Invisible Women by Caroline Criado Perez

Sick: A Memoir by Porochista Khakpour

Unwell Women by Elinor Cleghorn, which just came out

And finally, there’s the latest egalley on my Kindle, for a book that comes out in October: The Pain Gap by Anushay Hossain

(I mean, there are more, but I’m going to restrain myself.)

Take care of yourself, folks. And do listen to your body. It may be trying to tell you something and, gosh darn it, you should believe it, even if no one else will.

Steph Auteri

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Steph Auteri is a journalist who has written for the Atlantic, Pacific Standard, VICE, and elsewhere. Her more literary work has appeared in Poets & Writers, Creative Nonfiction, Southwest Review, and other publications. Her reported memoir, A DIRTY WORD, came out in 2018. She is the founder of GuerrillaSexEd.org. Favorite Genres: horror, comics, horror comics, and narrative journalism.