When I received my diagnosis of type 1 diabetes, an unrelenting autoimmune condition with no cure, someone cheerfully exclaimed, “At least it’s not cancer!” Another person smiled and said, “If anyone can handle this, it’s you.” More than one individual assured me, “They will cure diabetes any day now!”
That was fifteen years ago, and the gaslighting hasn’t diminished; if anything, it has intensified. People often assume that because I’m an adult with health insurance and a supportive network, my illness isn’t that serious. I’m utterly fed up — pun intended — with this medical gaslighting; it only amplifies my ongoing suffering.
The National Institute of Environmental Health Sciences states that over 24 million Americans are living with autoimmune diseases. With more than eighty different autoimmune disorders, this is a widespread issue. Notable conditions include type 1 diabetes, Celiac disease, lupus, rheumatoid arthritis, alopecia, and multiple sclerosis. Put simply, many people are affected by these illnesses.
Unfortunately, those of us with these conditions endure them every hour of every day, all year long. There are no breaks, no vacations, and no days off. Chronic illness is a constant presence, even when symptoms seem controlled. It lurks in the background, ready to disrupt our lives at any moment.
We fight daily battles. We cancel plans, call in sick to work, and reach out to our doctors — again. Living with an autoimmune disease means dealing with unpredictability; one moment, we can feel perfectly fine, and the next, we might be bedridden. Our conditions don’t consider our schedules or aspirations. They arrive uninvited and wreak havoc on our lives.
We may not always appear unwell. I often hear comments like, “You don’t look sick” or “You hide your illness well.” I’m not trying to mask my condition, but I am more than just my illness. Focusing too much on my health can be overwhelming; I can’t share every ache or symptom with everyone I meet, as that would be exhausting and could harm my social interactions.
Most people mean well, and they are fortunate not to fully grasp what it’s like to live under a constant cloud of illness. While I struggle with my body, they carry on with their lives, easily juggling errands and work, while I’m often preoccupied with medical expenses. Yes, working while ill is a challenge, and I admit it makes me envious of those who are unencumbered by chronic illnesses.
I have many family members and friends who show empathy, but even the kindest among them can unintentionally engage in gaslighting. After one particularly harrowing hospital stay, I returned home to find a pile of cheerful “get well soon” cards awaiting me. I would never fully recover; my condition is lifelong.
Then there’s the toxic positivity. People suggest that if I just tried something new — vitamins, shakes, or meditation — I might find a cure. That’s not how type 1 diabetes or autoimmune diseases work, but okay. They tell me to “stay strong” and “maintain a positive attitude,” but those sentiments don’t change my reality.
I’ve even been called an “attention seeker” by an online troll. I wanted to respond, “Yes, I chose to develop a lifelong autoimmune disease for attention.” Engaging with such negativity is pointless, yet those words linger in my mind. The truth is, I wish I didn’t require assistance from strangers when my blood sugar drops or when I need to catch my breath. I would gladly give up the medical visits and the need to carry diabetic supplies everywhere.
I am always subject to my disease. There’s no amount of prayer, inspiration, or willpower that can change that. I’ve mostly accepted the hand I’ve been dealt and just try to do my best to take care of myself. However, the persistent medical gaslighting creates doubt and frustration, a reminder that I’m not “normal.” I constantly navigate an ableist world that prioritizes health over illness and activity over rest.
When you encounter someone like me — whether a coworker, friend, or neighbor — I urge you to extend empathy. We don’t need unsolicited advice, critiques, or lectures on positivity. What we truly need are supportive words, attentive listening, and understanding. We’re already engaged in daily battles with our bodies, and the last thing we require is to fight against your judgments and opinions.
This article was originally published on Feb. 22, 2021.
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Summary:
The article discusses the pervasive issue of medical gaslighting experienced by those with chronic illnesses, particularly autoimmune diseases like type 1 diabetes. The author shares personal experiences of invalidation and well-meaning but harmful comments. They emphasize the importance of empathy and understanding from friends, family, and society, highlighting the constant challenges faced by those living with chronic conditions.