Please Stop With The Medical Gaslighting
When I was newly diagnosed with type 1 diabetes, a chronic autoimmune disease that doesn’t have a cure, someone cheerfully chirped, “At least it’s not cancer!” Another person smiled and remarked, “If anyone can handle this, it’s you.” More than one person told me, “They are going to cure diabetes any day now!”
This was fifteen years ago, and the gaslighting has yet to slow down or cease. In fact, I hear the same illness clapbacks over and over again. People assume that just because I’m an adult with health insurance and a good support system, my disease isn’t that a big deal. I’m so sick — pun intended — of the medical gaslighting, because it only makes my constant suffering worse.
According to the National Institute of Environmental Health Sciences, over 24 million Americans have an autoimmune disease. There are more than eighty autoimmune diseases. Harvard Health Publishing reports some of the more well-known conditions including type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis. To put it simply, there are a lot of people with these diseases, and there are a whole lot of diseases.
Unfortunately, the person living with the disease deals with it twenty-four hours a day, seven days a week, three hundred and sixty-five days a year. Yes, that means that life as a chronic illness warrior is non-stop. There are no vacations, no respite, no days off. It’s all day, every day, even when the disease is not flared or is considered well-controlled. It’s always there, lingering in the background, ready to pounce.
We fight. We cancel our plans, call in sick to work, and call the doctor — again. Those of us who live with an autoimmune disease will tell you how unpredictable our lives are. We can be perfectly fine one minute and quite ill the next — even bedridden. Our disease doesn’t care what we have scheduled, and forget about our hopes and dreams. It shows up when it damn well pleases and wreaks havoc on our schedules and our bodies.
We don’t always look sick either. I’m not even sure what that means, but people have said to me that I “don’t look sick” or that “you hide your disease well.” I’m not trying to hide my disease, but I am much more than just my disease. Plus, hyper-focusing on my health only makes me feel worse. I’m not going to announce every twinge of pain or symptom to every person I come into contact with. That’s not going to exactly win over any friends, and frankly, it’s draining to always be proving to someone how sick I really am.
I know people mean well, generally speaking. And they should consider themselves lucky to not truly understand what it’s like to always be under a huge cloud of illness. While my body is at war with itself, they are running errands, breezing into work with their energy-in-a-tumbler, and making plans that probably won’t get canceled. They have money to save for vacation, to put their kid in music lessons, or spend on overpriced coffee—while we’re constantly working to pay our medical bills. (Yes, working while sick—now that’s a real challenge.) I readily admit, I’m jealous of the able-bodied who live unencumbered by chronic disease.
I have many, many family members and friends who are empathetic. But even the most kind among them sometimes lets gaslighting slip in, unknowingly. Whether the gaslighting is intentional or not, it is harmful. I remember coming home from my five-day hospital stay after being brought back from near-death, to a stack of brightly colored envelopes on my kitchen countertop. I’m a huge fan of snail-mail, and I eagerly opened each envelope, only to feel more depressed than ever. Most of the greeting cards I received had a “get well soon” message on the front in glittery script. I would never get well. My disease, as of now, and since I was diagnosed, is forever.
There’s also the toxic positivity, like when people tell me if I would just try something new (vitamins, shakes, chiropractic care, meditation), maybe I would be cured? Um, that’s not how type 1 diabetes, or any autoimmune disease works, but okay. They’ve told me that I need to just “stay strong” and “have a positive attitude.” Neither of these changes one damn thing.
I have even been called an “attention whore.” Granted, this was by an online hater, but still. I wanted to say, “Yes, you got me. I magically forced myself into a lifetime autoimmune disease in order to get attention from strangers on social media.” Obviously, there’s no point in trying to reason with someone so cruel, but their words have stuck with me for months. The reality is, I would love not to need the occasional help of a stranger in a store, to administer juice when my blood sugar suddenly drops or I need to sit down to steady myself. I’d happily forgo the medical visits, carrying around loads of diabetic supplies everywhere I go, and letting my body’s bruises and scabs heal from years of needle pricks.
I am always, always at the mercy of my disease. I can’t pray, inspire, think, pay, or will my way out of it. For the most part, I’ve accepted the fact that this is the card I’ve been dealt, and then I just suck it up most days and do what I need to, to the best of my ability, to care for my body. However, the medical gaslighting that inevitably crops up can create doubt, anger, and frustration, reminding me that I am not, in fact, “normal.” I’m forever battling an ablistic world that values wellness over sickness and stamina over rest.
When you meet someone like me, whether you’re an acquaintance, family member, co-worker, friend, neighbor, or something else, please just extend to us a bit of empathy. We don’t need a devil’s advocate, unsolicited advice, a sales pitch, or a positivity lecture. We can definitely use a high-five, a “tell me more,” and pair of listening ears. We already battle our bodies every single day, and the last thing we need is to battle your opinions and judgements.
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