In my twenties, I could hide my invisible disabilities because they were both invisible and I had already learned that people had judgments about them that I couldn’t always handle well. Hiding my disability was a goal to me, to keep me safe, but it backfired. Now, not only will I have to sit with the consequences, but potentially others will as well.

I learned watching people react before I knew that I should or could hide them - it taught me a lot about the implicit biases and judgments that people had, and in a lot of ways I was grateful for my experience being disabled with my natural openness, because it gave me insight I never would have found as easily elsewhere into how othering effects the people who are targeted by it. Hearing the kinds of things that were expressed to me about my illnesses, that I had no idea other people could even get it that wrong so easily, will always be in my head. I always worked tirelessly on myself so that I didn’t have to feel such intense effects that my disabilities caused me, and as it was I could hide my disabilities so effectively that other people were shocked when I divulged them. I also didn’t know one of them at the time, so it was really when I divulged the one I knew about. I lived a disabled life, but I lived the kind of idealized to able-people disabled life, which is to have a disability that is so hidden that you effectively do not (to them) have a disability. This has caused problems, and I’ve seen them. People will expect everyone who has my disabilities to be able to hide them as well as I used to be able to. Or to work tirelessly at themselves so their disabilities are not ever put upon another person. I feel like I have accidentally tricked these people into believing the worst about people with disabilities without them ever realizing the problem with their actions. I wasn’t even for the most part aware I was doing this.

One day I became a parent, and my ability to hide my disabilities was shaken, and yet there I was and I persevered through and nobody would be any wiser. But then I became a parent again to another little cutie, and I stopped any pretense at being able to hide anything. In fact, my other disability popped it’s head out too and made itself known to me. My house became a disaster I couldn’t even comprehend being able to do anything about. I stopped being able to live up to the demands of life in the ways that everybody expected me to be able to. The pressures to preform kept building, and in fact still do. I was living in chronic overwhelm and the only thing that made it calm down was the ability to treat my second disability with medication. Yet living is hard, let alone thriving. When I ask for support, I am often faced with a wall of nothing. When that is not true, I begin to rely so heavily on my single outlet of support that I burn them out, because there is often only one outlet of support that I get. I am trying not to do that, it’s hard and complicated. I am complicated.

People had expectations of me as a person, and I let them down. I had dreams and expectations of other people too. That they would help me when I needed help, and recognize that I was disabled and understand what that actually meant, and that they knew that when I said something about the situation I was in, that they should listen to that and hear it. I thought that by being honest with the people I was closest to, that I was letting them in on the crucial knowledge that I was a complicated person who might need grace and understanding and help sometimes. Actually needing help has always been a complicated thing, and so I would only ever call on people when I actually needed it. As it turns out, I needed it so infrequently that they thought I would never need help. Their expectations of me were molded as I was, as a young independent and secure disabled person. Their expectations of what disability looks like were shaped. Now I am an inconvenience and a burden, but that is clearly not because I have been disabled and always will be disabled. It is a character flaw, it is a problem, it is ultimately in my control that I need more than what I’m being given.

If you see my fall from grace, know that I did let you down. I should have advocated better when I had the strength. I should have explained what disability was and now instead of seeing a person who has things going on and is struggling under the weight of it all, all you’re going to see is an inconvenience, is a burden. It is complicated because I don’t believe that disability makes you need more than other people need, it only makes you need what you can’t do on your own. If we had different systems, if we had different connections, if we had different structures than we wouldn’t need things in the way we do. It is because we are not considered that the need is great. On top of that, needing should never make somebody a burden or an inconvenience, it should only ever make them a human being. Yet we live in this world where needing anything automatically makes you an inconvenience or a burden or both, depending on what and how you might need something. Being disabled in this world, means I cannot live up to expectations. It is not fair, it is not easy, and I have no control over it. This is the reality I need people to realize about disability.