Since purging most of the influencers on my social media feeds, I’ve been searching for new people to follow. I picked several interesting thinkers, photographers, some minimalists, and found a large community of folks who suffer from chronic illness. I’ve had my diagnosis twelve years and had no idea such a large group of prolific posters existed, or that we could all coexist under the “chronic illness” heading despite vastly different lives. There are esoteric jokes and codewords I had to learn just to understand the memes about my own disease, and it has been really eye-opening.
When I was very ill several years ago, there was a lot of talk about “invisible illness.” The acknowledgement that our community had difficulty being recognized, or that we struggled for validation for debilitating symptoms because they weren’t widely understood, was reassuring at the time, but I don’t find it helpful anymore. It’s true, you can’t see my organs, but there are plenty of signs that are clearly visible to anyone who sees me, if only you’d look. It’s the same for most of our community, I’m realizing.
Chronic fatigue is seriously misunderstood, because everyone thinks they’re tired, and they are correct in a society where never disconnecting from work is valued and parents needs to do it all twenty-four hours a day. We are all tired. Chronic fatigue is not the same as being tired, though. Fatigue is never feeling refreshed, no matter how much you sleep. It’s crawling out of bed in a body that won’t cooperate when waking up causes physical pain. Everyone, especially in the parenting community, talks about how exhausted they are, so it’s easy to tamp down those complaints and assume it’s just part of being human to be falling asleep whenever we sit down, but fatigue is not just being tired after a late night bingeing Bridgerton (or the vivid dreams about the Duke that will surely follow). You can’t see my fatigue, but you can see the dark swipes under my eyes and slow-moving limbs that aren’t fully functional until hours after I get up.
If you look closely at your friends and family who suffer from an invisible illness, you’ll find it’s not invisible at all. The swollen face of someone on prolonged steroids can tell you their disease is not well managed and symptoms aren’t controlled by the safer meds available. A knee or wrist brace on someone with rheumatoid arthritis tells the story of pain that can’t be magicked away when no cure exists. A loved one with thinning hair from medication, ridges on our fingernails from malnutrition or powerful drugs that alter the rate at which cells reproduce, or maybe a neighbor wearing long sleeves in the summer to cover up changes in their skin. Bruises from needles and blown veins. My plate at dinner with soft cooked vegetables and a smoothie, passing on the wild rice and broccoli. A friend declining your invitation to go for a walk and instead suggesting a sedentary get together near a bathroom or a quick escape in their car if things take a turn. A colleague who refuses to commit to projects too far into the future because they can’t know the state of their health beyond today. Dark marks from cupping, greenish bruising from deep tissue massages, the cooling smell of muscle creams, and the appointments with naturopaths tell you we are trying everything.
Are you really looking at your chronically ill friends? Once you notice the signs of illness that are plain for all to see, then we can talk about the invisible side. If I’m having a smoothie for dinner it’s because my stomach feels like it’s full of blisters and paper cuts and if I eat anything that goes *crunch* I might end up in the ER. The ridges on my nails years ago spoke to the potency of the drugs my doctor and I turned to in order to try and get my symptoms under control when nothing else worked. When I say no to a walk, it’s because my joints are already swollen from a flare and I don’t want to damage them further.
The truly invisible part of chronic illness is the mental toll it can take. The world got a small taste of disease fatigue in the last year, when people got tired of hearing about COVID-19 and pushed it out of their minds to take vacations and have birthday parties. We feel the same way! We’re sick of being sick and just want to move on, and often that causes setbacks. Just like the world decided since they hadn’t been infected while wearing a mask then maybe they didn’t need masks anymore, as patients we tell ourselves we don’t need medication when we start to feel better, even though the meds are what is keeping us out of the hospital. It’s mentally taxing to be sick every day of your life. It’s difficult to have any sort of optimism when your disease is incurable. Do you know what it’s like to hope you have food poisoning and are not just spiraling into a flare that could take months to drag yourself out of? If you eat some bad sushi you’re hanging over the toilet bowl thinking, “ugh when will this end?” If you have a chronic disease you are doing the same thing, but understanding, “this will never end.” Even this intangible symptom has a visible outcome sometimes. A sense of self in decline can show up as an unkempt appearance; anxiety about health becomes a drop in social engagements or pulling away from loved ones.
In periods of good health, which I am fortunate to have throughout the year, I don’t get to fully quit thinking about my autoimmune disease. There are things I can never eat, like granola, which I actually love, that float through my mind in the grocery store. Since I never know when I’m going to be struggling again, I can’t plan for a riskier trip, like camping or backpacking, without reminding myself it’s probably not possible for me (but also yuck to not showering and peeing outside). I know people mean well when they say things like you could go into remission! or maybe it’s just the flu! but it’s not terribly helpful since people with chronic illnesses need to manage our expectations. Medical professionals have pretty much given up trying to give us normal lives. Imagine going to the doctor for pain and pyrotechnic vomiting and having them say it’s either that or we take out a bunch of your organs and it’ll come back the same in a year or so. I can’t stress enough the mental burden of having any kind of illness for life, and that truly is invisible, with some visible exceptions like another helping of fatigue.
133 million Americans, or two in every five people, have a chronic disease. Are you looking at us? Some of our symptoms are invisible, but we are not.