Living with an invisible disability is hard
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"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." | Photo Credit ©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 I lost my mother the next month. There was no competition between us for the 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 still stuck with me.
I always think about measuring my anger, sorrow, and frustration to ensure 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 illness or 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 a largely invisible struggle, including a long list of misunderstandings. There is a significant burden on people living with an invisible disability to make the invisible visible to others. [British Medical Journal]
Do I even deserve to call myself disabled?
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, other people 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 infantilized, 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 how it affects someone because those specific things will 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.
Whether you are living with an invisible disability or not, we are all human. People 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.
Stephanie Berntsen
Stephanie Berntsen (she/her/hers), the author of "Living with an invisible disability is hard," is a former paramedic and now a full-time student studying political science (yes, she knows you don't want to discuss politics).
