When I was first diagnosed with type 1 diabetes, a chronic autoimmune condition with no cure, someone brightly exclaimed, “At least it’s not cancer!” Another person chimed in, “If anyone can handle this, it’s you.” More than a few told me, “They’ll have a cure for diabetes any day now!”
This was over fifteen years ago, and the dismissive comments have not faded. In fact, I continue to hear these same remarks repeatedly. People often assume that because I’m an adult with health insurance and a solid support network, my illness isn’t significant. I am exhausted—no pun intended—by the medical gaslighting, as it only amplifies my ongoing struggle.
The National Institute of Environmental Health Sciences estimates that over 24 million Americans live with an autoimmune disease. There are more than eighty types, including well-known conditions such as type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis. To put it plainly, many people are affected by these diseases, and there are numerous conditions to consider.
For those of us living with these illnesses, the battle is relentless—twenty-four hours a day, seven days a week, three hundred sixty-five days a year. Chronic illness warriors don’t get a break; there are no vacations or days off. The condition is always present, lurking in the shadows, ready to strike.
We fight through it. We cancel plans, miss work, and repeatedly reach out to our doctors. Life with an autoimmune disease is unpredictable. One minute we might feel fine, and the next we could be bedridden. Our illness doesn’t respect our schedules or aspirations; it intrudes whenever it wants, disrupting everything.
Sometimes, we don’t appear sick. I’m not sure what that even means, but people often tell me I “don’t look sick” or that I “hide my illness well.” I’m not trying to conceal my condition; I just have more to my life than my illness. Focusing solely on my health often makes me feel worse. I’m not going to share every ache or symptom with everyone I meet—doing so would be exhausting and wouldn’t foster friendships.
While I recognize that people generally mean well, they should appreciate that they are fortunate not to know what it’s like to carry the weight of chronic illness. While my body fights against itself, they go about their lives, running errands and making plans without a second thought. They save for vacations, enroll their kids in activities, and indulge in overpriced coffee, while I struggle to manage medical bills. (Yes, working while unwell is a true challenge.) I admit, I feel envious of the able-bodied who navigate life unburdened by chronic disease.
I have many friends and family who show empathy, but even the most caring can unintentionally slip into gaslighting. I remember coming home after a five-day hospital stay, barely clinging to life, to find a pile of colorful envelopes on my kitchen counter. I love receiving mail, so I eagerly opened each one, only to be disheartened. Most wished me a “get well soon,” but I had to face the truth—I would never fully heal. My illness is permanent.
Then there’s the well-meaning yet toxic positivity, where people suggest that if I’d only try something new (vitamins, shakes, meditation), I could be cured. That’s not how type 1 diabetes, or any autoimmune disease, works. They tell me to “stay strong” or “think positively,” but those sentiments don’t change my reality.
I’ve even been called an “attention seeker” by an online troll, which stung. I wanted to reply, “Yes, I somehow chose to have a lifelong autoimmune disease just to gain attention from strangers.” It’s pointless to reason with such cruelty, yet those words lingered with me for months. The truth is, I wish I didn’t have to ask for help from strangers when my blood sugar drops or when I need to sit down to regain my composure. I’d gladly give up the medical appointments, the constant supply of diabetic gear, and the bruises from endless needle pricks.
I live in constant submission to my illness. I can’t pray, think, pay, or will my way out of it. Mostly, I’ve accepted the cards I’ve been dealt, pushing through each day to care for my body as best I can. However, the gaslighting that inevitably arises brings forth doubt, anger, and frustration, reminding me that I’m not “normal.” I’m perpetually battling an ableist world that values health over illness and endurance over rest.
When you encounter someone like me—whether as a friend, family member, coworker, or acquaintance—please offer us a measure of empathy. We don’t need someone to play devil’s advocate, give unsolicited advice, or lecture us about positivity. What we truly need is support—a high-five, an invitation to share more, or simply a pair of attentive ears. We’re already fighting our own bodies every day; the last thing we require is to contend with your judgments or opinions.
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Summary:
Living with a chronic illness like type 1 diabetes brings unique challenges that are often misunderstood or dismissed by others. The experience is a constant battle against not only the disease itself but also the well-meaning yet misguided comments and attitudes from those who don’t fully grasp the reality of living with an autoimmune condition. Empathy and understanding, rather than platitudes or judgment, are what those of us with chronic illnesses truly need.
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