Living with an invisible disability is hard

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A young woman, living with an invisible disability is sitting cross-legged in a garden. She is holding a mirror in front of her, which makes her torso invisible as we can only see the reflection of the garden.

©Eliana Cariac / Behance Creative Commons

Living with an invisible disability is hard

How much pain a person is experiencing isn’t a competition. Suffering should not be competition: disability is not the Pain Olympics.

Living with an invisible disability is hard. I don’t want to stray into “woe is me” territory here. I am fully aware that I have privileges that other disabled people do not, and that I do benefit from my disability being invisible. But, suffering is still suffering.

Almost ten years ago, one of my best friends lost her fiancé, and the next month I lost my mother. Between us, there was no competition for number one sufferer, but we noticed that when we spoke of our losses, people would invariably tell us that their suffering was worse. We began to call that weird competition the pain Olympics, and the term has stuck with me to this day.

It’s something I always think about, measuring my anger, sorrow, and frustration to make sure I’m not pushing myself into being bitter. So, I’m well aware that other people can look at my problems and honestly tell me they have it worse. I believe you, and I’m sorry. It doesn’t change the fact that living with an invisible disability is hard.

I battle my own body and mind, as well as self-doubt, just as much as I battle other people.

Many people living with an invisible disability, which often includes living with chronic pain, don’t always look different from healthy people. Not having a visible disability can often lead to living with a largely invisible struggle, including living with a long list of misunderstandings. There is a significant burden on people living with an invisible disability to make the invisible visible to others.

Source: BMJ, Archives of Disease in Childhood

Do I even deserve to call myself disabled? Do I deserve these accommodations? There are other people who need these resources more than me; should I even ask for help? I know, objectively and logically, that yes, I am disabled. My doctors don’t have any reason to diagnose me as something I’m not. Yes, I deserve these accommodations: they are reasonable, and I can’t function fully without them. Yes, there are other people who have it worse but getting the help I deserve doesn’t take away from them and their struggles.

Then there are the outside influences. I’ve had more than my fair share of confrontations by people who don’t understand the Americans with Disabilities Act (ADA) or just think I’m lying for special treatment. Then there are people within the disability community, not many, who fully engage in the pain Olympics. There have been days where I’ve battled the outside world, disabled individuals, and myself. You know what? It sucks. And, there are others who still have it worse.

These thoughts have come to the front of my mind because of an incident that happened to me just a few days ago. I got to experience the joy of wisdom tooth extraction at the age of 35 and had complications. When I went to seek emergency treatment, the dentist blocked the door and refused to treat me because I have a service animal. I didn’t look disabled enough to need one to him, so he told me I was lying.

I will never know the frustration, anger, and sadness that comes with finding a business that only has stairs, or that refuses to actually turn on a wheelchair lift. Or being spoken to like a child. Or people just pretending I don’t exist because my presence makes them uncomfortable. Or any of the other awful ways people treat disabled individuals. I can’t fully understand just how it affects someone because those specific things will most likely never affect me. But, I understand the staring, the whispering, the accusations, and the disbelief. I understand the self-doubt. I know many people understand these feelings, too.

We are all human, just trying to survive in a world that is unkind. Please, be kind to each other, be understanding with each other, but mostly, stop comparing sorrow. It serves no purpose and doesn’t make you feel better. The disabled community I know is diverse and filled with wonderful people. I can’t imagine what it would look like if we alienated each other.

Article by
Stephanie Berntsen

Stephanie Berntsen (she/her/hers) is a former paramedic and now a full-time student studying political science (yes, she knows you don't want to discuss politics).


"I’m well aware that other people can look at my problems and honestly tell me they have it worse. I believe you, and I’m sorry. It doesn’t change the fact that living with an invisible disability is hard."