[originally posted on (S)lightly Disabled]
Having an invisible disability or chronic illness often means a lot of things get left unsaid when you interact with others – friends, acquaintences, co-workers, even people you love. Sometimes it’s about not wanting to “kill the vibe” or be a burden. Sometimes it’s about internalized guilt or even internalized ableism. Talking about one’s chronic illness can often be seen as being “negative” or “defeatist.” Sometimes even well-meaning people don’t really know what to say in response.
So it’s easier to not say anything.
When my vision loss started to get worse. I spent a few years being avoidant. I used to be a lot more social – even kind of a partier, I love live music and concerts – but increasing anxiety about night vision made it harder for me to leave the house at night, so I stopped doing it.
But another thing I stopped doing as much is just hanging out casually with friends. It started to make me nervous, especially when people asked me how my eyes were doing.
It wasn’t their fault, and usually the person asking was simply being curious and thoughtful. It was just hard for me to answer because the answer was rarely “fine” or “better.” It was often “worse” or “frustrating”. Or at the very least it was “unchanged from the last time I saw you.” It’s hard to talk about the daily reality because… it sucks and it’s annoying and it’s NOT fun. It’s not fun to talk about how the changing weather irritates my eyes and makes my scleral lenses painful to wear. Or how digital eye strain makes me wish I had chosen another line of work but I think it’s too late for me to switch careers. Or how I feel sheepish asking a stranger to read a sign for me. Or that my insurance denied my claim again, and I don’t have $2000 on hand to pay for my medically necessary lenses. I mean sometimes I do, and usually the answer is a brief, awkward silence, and “I’m sorry.” A real buzzkill.
So it’s easier to not say anything.
I’m not saying this to make my friends or acquaintances feel bad for asking me about my eyes. I always appreciate that people think of me. It’s just hard to know what to say that’s both polite and honest. Because I don’t wanna sound like a complainer. But I also don’t want to lie about what’s actually going on in my life, because it does affect my life. It’s the reason why I’m often tired at the end of a long day of work, or why I cancel plans at the last minute.
I think about this quite a bit and I don’t really have answers for what to do. But even writing about what goes through my head every time someone asks me about “how my eyes are doing” is more than I’ve ever done before, so it’s a start. I hope one day talking about chronic illness and disability as normal, as an every day occurrence, becomes more normalized because I think having the room to have “not -so-great-days” and to say the things left unsaid would help a lot of people more than polite silence ever could.
Keidra Chaney 