My Disability Matters Club

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?

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7 Comments on “Visibility and Invisible Illnesses

  • Wendy, it is such a sensitive issue, isn’t it? My son suffers from mental health issues,(schizophrenia) and he has become much more open about it since he first started to suffer 5 years ago. He saw it as a stigma. Perhaps it has veered too much away from privacy now, in the sense that he revealed his condition to his co workers when he got a job on a building site . It was a difficult day for him because of course they teased him all day. It was big contrast from the understanding he had received when he was struggling to finish his degree at uni.
    I also am never sure how much to say to my own friends either, since although we are not ashamed of his condition and feel that it actually helps others to be open about mental health, yet I respect his confidentiality. From my own perspective, and personal and selfish viewpoint, I really find it helps to let people know how his family and loved ones cope day to day.
    I think you can only go with what feels right? Not very helpful, I know…

  • For me it is a balancing act. While the mild cerebral palsy I have causes it’s own set of challenges. For me the bigger issue is the severe tinnitus. Which is extremely bad all the time. I have a high pitched tone that is 24/7. It also has cause some moderate hearing loss. It is always bothering me. It never lets up. Though I rarely go into details about it. I don’t like to complain. However I am not afraid of raising awareness for the challenges that I face. Even though I don’t post about it all the time. I’m not afraid to talk about it when the need comes up. Putting the issues that I have into context so I can explain to people what is going on and why is it bothering on such and such a day. It is away to reach out to others. Above all else I don’t expect people to understand what I am going though. I just want people to understand how it impacts me and how I chose to deal with it. I can share a few links to the “Praying at the Bricks” blog where I talk about a few things.

    -JM

  • I love your post. This has made my day a bit brighter. Having epilepsy everyone around sees me a regular looking guy, but that can change at any moment when I have a tonic clonic seizure and am on the ground unconscious. Its important for me to make sure I always have someone near me that knows what to do when it happens and has my rescue meds ready. I used to want people to know I was different and had a problem so I would keep my hair shaved short so that everyone could see the scar from my two stage brain resection surgery, but over the span of a few years I learned that people really never asked about the scar. I dont know if it was because they were scared of hurting my feelings or if they really didn’t care. So now I let my hair grow out and you cant really see the big question mark shaped scar that takes up most of the left side of my head. While my life can be at danger at a moments notice I am blessed with my family who sticks with me. While anyone with a brain can have a seizure, I dont expect everyone to understand what its like. I just want them to know the weight that it makes me carry.

  • Hello Wendy, I am new to disability matters and have just read your wonderful post-blog-article. I am a 55 year old male and have complex and comorbid ptsd, physical disabilities and psychological health challeges that are invisible to others. To look at me now, everybody would ‘assume’ and see me as a ‘normal’ man going through the daily routine of life. I find that when greeting people and they ask “how are you?” I can respond in a few different ways. If I respond with ‘good thanks’ the person smiles and the conversation usually continues. If I respond, “Oh not too good lately, my Osteoarthritis has been treble in this cold weather, I’ve been so depressed I was thinking of taking an over dose and ending this lifetime of pain and suffering,” or something along those lines, the other person usually pulls away and quickly ends the meeting. So depending on my mood, and if the person is genuinely concern or not, I can choose to share my health challenges or not. Kind Regards, Mark

  • This is a tricky one; I’m now 68, have always had a disability due to ‘mild’ Spina-Bifida, (SB) with other side-effects followed up with full-blown Meningitis 6 weeks after I was born. My disabilities are ‘Invisible’ although I did attend a boarding school for the disabled for about 3 years. I’m physically pretty active – used to even ride motorcycles for almost 30 years until I had problems with my feet (NOT from motorcycling accident!) so had to give that up, (one leg amputated below knee, foot on the other, deformed)and now sometimes use a wheelchair because my balance is pretty bad. My issue is in owning up to the incontinence caused by the SB … It’s something I am still ashamed of and don’t own up to. The Meningitis I am now realising has probably been affecting my short-term memory since day one but seems to be getting worse, which impacts on me socialising because people use small-talk while I prefer discussions which don’t ‘wander’ all over the place! Does one ‘own up’ and face up to the fear of being ridiculed and talked about behind my back? I’ve yet to come to terms with this, so don’t own up.

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