I Was Terrified to Tell People I Have a Disability — Until I Was Forced to Be More Vulnerable Than I'd Ever Been Before

Amanda Van Slyke

(Photo: Getty Images)

I didn't want to go out if that meant I had to pretend I was someone I wasn't.

I've been writing about having a disability for years — even before I realized I had one — so it may come as a surprise that ever since I went on welfare I've been terrified to talk about it in public. Everyone who knows me knows that I have a disability, but that's because everyone who knows me has already seen my posts about it on social media or read my articles, where I don't experience the symptoms of social anxiety. The root of my anxiety is the fear that people will negatively judge me when I show them the real me, and it's been keeping me from attending social gatherings where I'll meet new people for a long time — until now.

Online, I may see negative comments, and yes, I'm still learning to deal with them, but I don't have to wait for someone's facial expression after I answer what I do for a living. I don't have to carefully dodge their questions after I tell them that I write freelance or run a magazine, when they ask, “Do you really support yourself on that?” I don't have to walk around a party aware of how old my clothes are or decline going out to eat because I can't afford anything on the menu. I don't have to feel less valid making small talk about the house someone's buying or the vacation they went on or the shopping spree they took because trying to contribute to the conversation makes me feel like I don't belong in the room.

When I first dropped out of university due to health issues, I remember feeling so out of place at a party, where everyone was talking about what they were studying at school. The culture hasn't changed since, and I feel the shame of not being able to conform to society's expectations: Get a well-paying job, buy a house, buy a car, get married, have children. Even though I've never been afraid to go against the grain as someone who doesn't want marriage and children, not being able to legally live with a partner who makes over a certain amount of money makes it hard to relate to others. If I'm lucky, I make a few hundred dollars a month from freelance work or advertising revenue, which barely covers what my benefits don't. I've learned to be happy with less — but in our capitalistic society, it makes me feel like an outsider.

When people were getting their degrees, their second degrees, or masters, moving up in their careers and travelling the world, I was fighting to understand what was wrong with my body, going to doctor appointments, losing jobs, and trying to explain to friends and family why I lost another one — but I barely knew myself. To this day, after six years and a severe disability diagnosis, I still suffer from self-doubt that I even have one, because the stigma that people with disabilities are lazy is alive and well. So even though I desperately wanted to get a degree and have a stable career in communications, I started telling people that I was happier working as a freelancer from home — and eventually, I started to believe it, because the more I did what I needed to do to take care of myself, the better I started to feel.

After a lengthy report and years of being told that I'm “too slow” and “not learning fast enough,” I now know that my dyspraxia gives me a low processing speed and a bad memory, and paired with my premenstrual dysphoric disorder symptoms, like severe anxiety and mood swings most of the month, that gives me one week — the week after my period — where I feel like myself. This means one week out of the month where I can try to fight through my dyspraxia symptoms to feed myself regularly, try to get to work on time every day, attempt to work quickly and efficiently; be a happy, positive person at my job; and not be too exhausted to call in sick after a few days — and even if someone was wiling to hire me for that one week a month, I wouldn't make enough to support myself.

Out for my 27th birthday.
Out for my 27th birthday.

As you can imagine, this isn't exactly small talk, so for the last six years I've kept these issues inside other than in my writing or talking to close friends and partners. For the past couple of years, my ex would bring me to events where I'd meet his friends and family, and I'd have anxiety attacks beforehand because I didn't know how to be a relatable human being. I felt like I had to tell white lies for every question, and not being able to be myself made socializing exhausting. A person might think, “Fuck it — I'll just tell the truth,” but I had been conditioned early on, from my parents to friends to partners who had believed at one point or another that if only I worked harder I could keep a job.

When my last partner and I were a few months into dating and on our way to meet his family, as supportive as he was of my disability, he made me feel like I should hide some aspects of myself by asking me not to bring up my past to his conservative family. I obliged because I wanted to make him comfortable, but that feeling of having to hide myself carried over to his friends as well, and soon the pressure to appear like I was conforming to society's expectations became too much. I didn't want to go out if that meant I had to pretend I was someone I wasn't. I felt this terror that if people found out the government supported me that I would be looked at as less intelligent, less capable, less than. Even though my partner didn't directly say he saw my disability negatively, we had discussions about me "coming out" to his friends and family, where he was clearly uncomfortable and unsure how to explain why. So when we broke up because of unrelated reasons, I was finally ready to feel the freedom of going to the party as myself.

It's been a month since we broke up, and even though the relationship was an incredibly important time in my life, and I wouldn't be the person I am without it, I've never been happier. 

I trace all of it back to when I began reaching out to people to talk about the breakup. Through this, I found an unexpected lesson: that when you find the right friends, they'll make you feel like there's nothing wrong with you. Talking about the end of my relationship became a way to find common ground with people, and quickly I realized we could bond over similar things — heartbreak, mental illness, diet and exercise. The more time I spent around people who didn't want to make small talk but actually wanted to discuss real issues, the more I wasn't afraid of being myself and mentioning that I had a disability. I've started to go to more events, talk to strangers more, and make more friends.

If you're currently struggling with wanting to be yourself around others — whether that's being able to talk about your disability or something else — remember that it's a long road to self acceptance, and in time, after a lot of internal work, you will come to terms with who you are. That doesn't mean you have to disclose every detail to strangers, but for me, coming out as a person with a disability — just like when I came out as queer — means having the option of being completely open about who I am, both online and in public, in order to feel like I'm being my most authentic self. It means taking away the pressure of trying to appear like someone, and because of that, these days I look forward to going to events rather than dreading them.