As we line up for Covid vaccines, can we better understand chronic illness?

Oh no, tired and achy

“Seeing everyone who’s really worried about feeling crummy for a day or two after the vaccine makes me think about how fun it must be not to have chronic illness,” I tweeted on a whim last week. It turned out hundreds of people across multiple platforms could relate. “‘Oh no, tired and achy’—come on our level,” one commenter said. “That’s how we live, every bloody day, and it feels like no one cares,” another added.

Others said they’d be thrilled to have pain that they knew was temporary and had a specific cause. (Fortunately, common vaccine side effects such as aches and fatigue are just the natural signs of our immune system working to recognize the protein in the vaccine and get ready to stomp the virus if it ever does make it into our bodies.) I can relate: between a mood disorder, occasional migraines, and a couple of painful chronic physical illnesses, I’m very accustomed to symptoms like brain fog, widespread pain, headaches, and exhaustion. They can hit without warning and last hours, days, or weeks.

Health is not binary

It’s a life that’s often hard to explain. People (including many doctors) who are used to living in healthier bodies (or carry other prejudices) have had unhelpful responses to my pain: “You just need to lose weight”; “You need a psychiatrist”; advocating a certain kind of exercise or supplement that ignores my circumstances, as if the right habits will cure my illness. Maybe I just need a good night’s sleep. Or I just really need to want to get well.

Many people with a more reliable body and brain than mine don’t share my concept of illness—and I understand why. To them, sickness or pain is a finite event: recovering from the flu or healing a broken bone. But health isn’t a simple, binary opposition of sick or well, injured or whole, as many Covid survivors are finding.

Respecting different bodies

Some Covid sufferers experience no perceptible symptoms; others have a mild, moderate, or severe illness and recover. A growing group, dubbed “long haulers,” end up with organ or neurological damage or symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This unpredictability is giving rise to new awareness of life with chronic illness as huge swaths of the population who once took their health for granted are frightened of a rampant illness with long-term, poorly understood complications and our medical system gears up to handle a potentially huge influx of people suffering chronic symptoms in the aftermath of infection.

On a social media thread reporting about this issue, I was dismayed to see someone proclaiming that he’d rather die than live with the disabilities some people experience after a Covid infection. This is a profound and toxic misunderstanding of life for millions of people, including me, long before the current pandemic, and it’s disturbingly prevalent. People who urge a quick lifestyle fix for complex syndromes without truly listening to the people living with these issues are showing another failure to understand and honor different kinds of bodies. If and when we move past the pandemic, there will be many, many more of us forced to understand a whole new world of “health” firsthand.

Is it validating for people with chronic illness to see the long-term effects of Covid getting so much airtime, when millions of us live with similar conditions that are poorly understood? Or is it frustrating that it took a pandemic for more people to take chronic illness seriously?

Don’t get me wrong—I’m glad to see people practicing better self-care, like taking the day off after a potentially painful (but worthy) vaccination, regardless of their medical status. That makes me hope that more people are taking steps toward ditching a harmful grind culture, and rightly refusing to prioritize work over their own bodies. Maybe that’s a positive shift that can follow us out of the pandemic.

Where we’re not machines

Folks without chronic illness who are stressed about a day or two of vaccine side effects might have the opportunity for a new perspective on life for millions of people who live in a different kind of body. And if that happens, maybe we could have a world where those differences don’t matter so much; where our bodies aren’t machines that need to go into the shop once in a while, but are their own imperfect kingdoms of hunger and satisfaction, effort and relaxation, pain and comfort, and we do what we can to keep it all in balance.

In that world, if you’re suffering, no one would say “lose weight” or “it’s all in your head” or “do some yoga” or “try CBD oil.” We would accept pain and illness as states we all navigate, some people more than others, through no fault of their own. We would give validation, compassion, treatment, and accommodation as needed, and, especially as we all get in line for vaccination, understand that no-one is invulnerable.

Image description: A half-full glass of water and a small blue plastic pill box with a labeled segment for each day of the week resting on a white surface against a black background.