When I received my diagnosis of type 1 diabetes—a chronic autoimmune condition without a cure—people often tried to comfort me with comments like, “At least it’s not cancer!” or “If anyone can handle this, it’s you.” I even heard, “They’re going to cure diabetes any day now!” Fifteen years later, the gaslighting persists. Many assume that because I’m an adult with health insurance and a solid support system, my condition isn’t that serious. I’m so fed up with the medical gaslighting; it only amplifies my ongoing suffering.
According to the National Institute of Environmental Health Sciences, over 24 million Americans have an autoimmune disease, with more than eighty different types documented. Conditions like type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis are just a few examples. The reality is that those living with these diseases face them every moment of every day, with no breaks or days off. Even when symptoms are under control, the disease is always lurking, ready to disrupt our lives.
We make sacrifices—canceling plans, missing work, and visiting the doctor repeatedly. Life with an autoimmune disease is unpredictable; one moment we may feel fine, and the next, we could be bedridden. Our illnesses disregard our schedules and aspirations, showing up whenever it pleases.
It’s also worth noting that we don’t always outwardly appear sick. People often say I “don’t look sick,” as if that somehow lessens the reality of my condition. I’m not hiding my illness; I’m simply more than just my disease. Constantly focusing on my health can feel overwhelming, and it’s exhausting to justify my struggle to others.
While many people have good intentions, even those closest to me can inadvertently contribute to the problem. I recall returning home from a five-day hospital stay to find a stack of cheerful “get well soon” cards. The truth is, I will never get well. My condition is chronic, and I must accept that reality.
Toxic positivity also plays a role. Some suggest that if I simply try new remedies—be it vitamins, shakes, or meditation—I could find a cure. This is not how autoimmune diseases function. I’ve been told to “stay strong” or “maintain a positive attitude,” but these platitudes do nothing to change my situation.
I’ve even faced cruel accusations, like being called an “attention seeker” online. It’s disheartening to think that someone would believe I would choose to live with a lifelong autoimmune disease for attention. I wish I didn’t need assistance in public or have to carry my medical supplies everywhere. I wish I could forgo the endless medical appointments and the toll they take on my body.
Every day, I confront the reality of my illness. I cannot pray, think, or will my way out of it. While I’ve mostly accepted my situation, the gaslighting can still create feelings of doubt and frustration, reinforcing the notion that I’m not “normal.” I constantly grapple with a society that prioritizes wellness over illness.
If you encounter someone like me—whether a friend, family member, co-worker, or neighbor—please show us empathy. We don’t need unsolicited advice or a lecture about positivity. What we need are listening ears and understanding hearts. We already fight our own battles daily; we don’t need to face your judgments as well.
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Summary:
The article discusses the ongoing struggle with medical gaslighting experienced by individuals with chronic autoimmune diseases, particularly type 1 diabetes. It emphasizes the importance of empathy and understanding from others, as well as the challenges faced daily by those living with such conditions. The author shares personal experiences of misunderstanding, toxic positivity, and the emotional toll of chronic illness, urging readers to offer support instead of unsolicited advice.