Visibility and Invisible Illnesses

It can be isolating to have a disability. I’ve seen this both in myself and in others. Having an invisible disability can create a barrier where no one knows what you’re going through. And you could be sitting beside someone who is actually going through a remarkably similar struggle, and neither of you has any idea you could be so helpful for one another.

I am currently a third year graduate student. Shortly before I started, I had a concussion that never quite healed right, making my first year of graduate school exceedingly difficult and was something very obvious to everyone around me. I have since healed to the point that I can function quite well, but the pain is always there and I have visual problems. I recently started wearing pink-tinted lenses, which help my headaches, but that is the only visible sign of my disability.

Last week, a professor introduced me to one of her freshman students who had a concussion just under a year ago and is struggling to heal and cope. We talked for awhile in the hall, and I gave him an open invitation to swing by my office if he wants to chat. He was obviously relieved to meet someone else who experiences similar complications, and I found it helpful as well.

I’ve debated for awhile on how open to be about my disability. I am normally a very private person, and generally don’t tell people about my disability. However, I greatly appreciate the times I can talk candidly about being in pain and the related anxieties, particularly with someone who gets it because they’re also affected. 

What builds your decisions about making an invisible disability visible and known to others?

Or for those of you with invisible disabilities, how do you decide when to share what that aspect of your life is like?

I met one person at a conference whose Facebook posts are the only reason I know she has a disability. I’ve since messaged her when she posted about a rough day, and told her that it helps me to see her posts and know that I’m not alone, which she reciprocated. And as a teaching assistant for classes, I have worked with a disabled student who seemed comforted by the fact that I could empathize with her struggles. But it’s very possible that I had other disabled students who didn’t know that I have a disability and would have benefited from that knowledge.

So in short, I think I’d like to make my disability more known to others, but want to keep some balance between privacy and visibility. And I’m curious to hear other thoughts on these issues. How do you all make these sorts of decisions? In what ways do you choose to share your experiences?

About the author: Wendy Leuenberger