person surrounded by people with judgmental looks

Stigma and Shame: How It Has Affected My Life

Almost four years ago, I was diagnosed with Hidradenitis Suppurativa, a chronic inflammatory skin condition that affects the hair follicles. Living with this skin condition was complicated because it is rarely diagnosed and discussed, making me feel like an outsider looking in. The only way I successfully dealt with the condition was to talk about it because hiding and denying your feelings does not solve the problem - it only makes it worse.

When I told others about my experience of being diagnosed with a rare disease, I was met with skepticism and narrow-mindedness. I got the impression that some didn't think I knew what I was talking about, and questioned my illness's reality. Some people said, "I've worked in the medical field for years and never heard of Hidradenitis Suppurativa." and occasionally I heard, "Well, you don't look sick." Oftentimes, people appear well when they aren't because chronic illness is invisible.

Harsh assumptions and narrow-mindedness were nothing new

The more I learned about Hidradenitis Suppurativa and adjusted to living with it, the more I realized the harsh assumptions and narrow-mindedness I encountered were nothing new. In my childhood, I had a well-developed body. I was overweight, but not obese. In my neighborhood and at school, there were few obese or overweight students, so those who were obese or overweight received attention. I had to shop a size up and make sure the clothing I purchased was suitable for my age since many people believed I was older than I was.

A server at a restaurant thought my mother was trying to get me a children's meal by stating I was younger. It wasn’t uncommon to hear “you’re big for your age”, but by the time I got to high school, there were so many body types and sizes I didn't stand out. Being able to blend in was reassuring. It never occurred to me that I'd have to deal with assumptions about my body and health in my later years.

Stigmatizing and shaming do not solve problems

It will never make sense to me why some people believe stigmatizing people with chronic conditions can lead to better outcomes. As history has proven, stigmatizing and shaming do not solve problems, but worsen them. How much better would it be if those who ostracized or embarrassed us understood what it's like to be a social outsider who falls short of expectations? Perhaps if they lived our daily lives, they could understand what we're going through and help us. Hopefully, they'll understand what it's like to be called unfriendly, impolite, or strange for not talking at work when in reality, you're feeling otherwise. Being forced to cancel an appointment with a friend after a flare suddenly appearing. Or what it's like to be called a hypochondriac or health freak.

Unfortunately, stigma and shame persist. Nevertheless, I will continue to raise awareness of Hidradenitis Suppurativa, because many people are unaware of the disease. To defeat discrimination, stigma, and shame, we must advocate for them on issues that are important to them. It is imperative that they have access to accurate information about the disease, to combat misinformation. By choosing supportive words rather than stigmatizing ones, we can stop the stigmatization of chronic illness in our community.

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