Ouch, that hurts!
Ever had someone say something insensitive about your illness? Last week, I went shopping with my medical mask. I’ve learned that if I act like this is normal, people around me usually do the same. As I was paying, the saleslady laughed and said, “What are you contagious?”
I wanted to snap at her. Instead I calmly said, “I’m not contagious. I have an autoimmune disease and I can’t get a cold or the flu.”
She replied, “Oh, I really like your shirt.”
I said, “Thank you.” After all, it was a fabulous shirt.
That was it. It was one of those “did that just happen?” moments. I had left the house that day after being bedridden for three weeks and her words were the last thing I needed. I’ve had other experiences like these because I have Bipolar II (diagnosed at age 18), Polycystic Ovarian Syndrome (19), and Myasthenia Gravis or MG (24). MG is a neuromuscular autoimmune disease whose symptoms are often confused with Multiple Sclerosis. From meeting other sick women with mental illness, and diseases like Lupus, Alopecia, MG, Sjogren’s, and Fibromyalgia, I know I’m not the only one.
Lack of Understanding
I’ve heard everything—people who knew I was sick calling me fat when I gained ten dress sizes between 2008 and 2010. Or new doctors assuming I’m lying about being in pain because I have bipolar disorder and “mental illness = dishonest.” Some mean remarks are born out of misinformation—the media says that all mentally ill people are bad. Other comments are born out of a need to make sense of the senseless. When people ask why I carry a cane, I tell them I have Myasthenia Gravis. This elicits a “say what” look. Because MG only happens to 1 in 100,000 persons, some people insist that I must have done something wrong—surely I was doing drugs, not exercising, and morbidly obese. When I tell them I never did drugs, exercised daily, and was slim, they scratch their heads in disbelief. Because deep down, they know that illness can happen to good people—it can happen to them. That scares them.
Getting ready for the holidays
The holidays are great for bonding with family, friends, and acquaintances, but we can sometimes be confronted with insensitive comments at gatherings. Here are 3 suggestions:
- Expect insensitivity: When it comes to physical changes, I’ve learned that people are visual and that society expects women to never change. Ever. With my bipolar disorder, I’ve learned that mental health stigma is ubiquitous. At a recent party of a high school friend, teachers were asking me about my job. When I told them I was preparing to speak at a mental health convention, they wanted to know why, which prompted me to tell them I have bipolar disorder. They looked shocked. I broke the tension when I responded by calmly saying that I have this illness, I’m doing well, and it’s a part of me (like my race) but it does not define me. This lead to a healthy discussion on mental illness.
- Differentiate between the intentional and unintentional: Some people get high from kicking others when they’re down—it makes them feel better about their own insecurities. If someone doubles down when corrected (example: “No, you really are fat!”), he/she is deliberately mean. I don’t waste my time with him/her. By contrast, when a well-meaning friend says something tactless (“I could barely recognize you because you’ve changed so much”), I explain why those words hurt.
- Respond, don’t react: I wanted to snap at the salesgirl. But I didn’t because I’m a Christian and my anger would accomplish nothing. Who knows? Maybe she googled “autoimmune disease” later. She probably won’t laugh at another masked customer seeing as she tried to atone by complimenting me. When we are insulted, we have an opportunity to educate others about our illnesses. Ultimately, some of those people will learn to treat other chronically ill people with compassion.
–Stylist to the Sick,