When I first received my diagnosis of type 1 diabetes—a chronic autoimmune condition without a cure—someone optimistically remarked, “At least it’s not cancer!” Another person insisted, “If anyone can handle this, it’s you.” More than one individual claimed, “They’ll find a cure for diabetes any day now!” That was fifteen years ago, and the gaslighting has not diminished. In fact, I continue to hear these dismissive comments repeatedly. Just because I’m an adult with health insurance and a supportive network, many assume my illness isn’t serious. I’m utterly exhausted—pun intended—by the medical gaslighting, which only amplifies my ongoing struggles.
According to the National Institute of Environmental Health Sciences, over 24 million Americans suffer from autoimmune diseases, and there are more than eighty such conditions. Well-known examples include type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis. To put it simply, many people are affected by these diseases.
Unfortunately, the individual living with such a condition endures it every moment of every day, without breaks or vacations. Life as a chronic illness warrior is relentless. There are no days off, even when the disease is under control or not flaring up. It’s always present, lurking in the background, ready to disrupt.
We fight through it. We cancel plans, take sick days, and make yet another call to the doctor. Living with an autoimmune disease means experiencing unpredictable highs and lows; one minute you can feel fine, and the next, you could be bedridden. Our diseases don’t consider our schedules or aspirations; they simply intrude whenever they choose, wreaking havoc on our lives.
Ironically, we don’t always appear sick. I’m not sure what “looking sick” even means, but I’ve been told I “don’t look sick” or that I “manage my illness well.” I’m not trying to conceal my condition; I’m just more than my illness. Focusing too much on my health can be overwhelming. I can’t disclose every ache or symptom to everyone I meet; doing so would drain me and wouldn’t help build friendships.
I understand that people generally have good intentions. They should feel fortunate to not know the constant weight of illness. While I grapple with my body, they navigate their daily lives, brimming with energy, making plans, and enjoying luxuries. They have the ability to save for vacations or support their children’s extracurriculars, while we’re busy managing medical expenses. (Yes, working while unwell is a true challenge). I admit, I often envy those who are free from chronic illness.
I’m fortunate to have many empathetic family members and friends, yet even the most compassionate can unintentionally perpetuate gaslighting. Whether intentional or not, these comments are hurtful. I recall returning home from a five-day hospital stay, just shy of death, to find a pile of colorful envelopes on my kitchen counter. I love receiving mail, but as I opened the cards, I felt increasingly disheartened. Most bore glittery “get well soon” messages, but I would never be well; my condition is permanent.
Then there’s the toxic positivity. Some suggest that if I only tried something like vitamins, shakes, or meditation, I might find a cure. That’s not how type 1 diabetes or any autoimmune disease operates, but sure. Others insist I simply need to “stay strong” or “maintain a positive outlook.” Neither of these changes my reality.
I’ve even been labeled an “attention seeker.” This was from an online troll, but still, it stung. I wanted to respond, “Yes, I chose to develop a lifelong autoimmune disease just to garner attention on social media.” Obviously, reasoning with someone so cruel is futile, yet their words lingered with me for months. The truth is, I would prefer not to rely on strangers for help in stores when my blood sugar drops, or to avoid carrying around diabetic supplies everywhere. I’d happily forgo medical appointments and the toll they take on my body.
I am perpetually at the mercy of my illness. No amount of prayer, inspiration, or willpower can change that. I’ve mostly come to terms with my situation, pushing through each day to care for myself. However, the persistent medical gaslighting can instill doubt, frustration, and anger, reminding me that I am not “normal.” I constantly navigate a society that values wellness over illness and endurance over rest.
When you encounter someone like me—whether a friend, family member, coworker, or acquaintance—please extend a bit of empathy. We don’t need a devil’s advocate, unsolicited advice, or lectures on positivity. What we could really use is a simple high-five, a “tell me more,” or a listening ear. We already battle our bodies every single day; we don’t need to contend with your opinions and judgments as well.
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Summary:
Medical gaslighting is a significant issue for those living with chronic conditions, such as type 1 diabetes. Despite well-meaning comments from friends and family, these remarks can exacerbate feelings of doubt and frustration. It’s essential to approach those living with chronic illnesses with empathy and understanding, rather than dismissive comments or unsolicited advice.