How to Tell People About an Invisible Disability

12 Feb

This came up as a question from a student when I was presenting at a university last fall. The student was recently diagnosed with a cognitive condition and asked me, “How do I tell people about it?”

I happen to start answers to most questions about disability with, “It’s different for everyone….”

It is indeed different for everyone, and once I said that, and was able to identify that this person’s obstacle to disclosure was fear, I aligned my answer with my secret to overcoming fear.

Basically, it’s to start with something easy and then do something a little more difficult and then the next most difficult, and so on. Like, if you’re nervous about eating out in public by yourself, first go to a cafe and get coffee “to go” and sit down while you drink some of it. Then go to a mall food court and order a snack and sit down to eat it. Then go to a diner for lunch and sit at the counter. Until finally you’re making a reservation at a fancy place and going out for a date night with yourself and savoring every moment.

For maybe a better explanation (and hopefully a laugh or two) Take two minutes and watch this excerpt from my keynote at a women’s leadership conference:

Yes, I was afraid while speaking there. In fact, that was my first-ever gig as a professional speaker. I’d sneaked away from my full-time job who had no idea I was starting this business. And look where I am today. This *is* my full-time job!

Back to the question. What I said to this student was, if you want to tell people about your diagnosis, start easy. Tell your best friend. Tell the people you have very little fear of telling. Then tell people you know and like but who aren’t necessarily in your inner circle. Work your way out through the circles.

As far as what to say, as in what words to use? I didn’t get that far in answering this question, but my own preference is to be straightforward. Don’t attach any qualifiers or downplay or indicate anything about shame. If I act ashamed of my conditions, then people will hear that shame and mirror it. People treat us the way we teach them to treat us. So I present my condition as it is: real, disabling, blameless.

I also find it best to talk about when I’m having a better day. In any context of discussing disability and chronic conditions, I always believe it best to talk about it when we’re feeling our best and not in a moment of battling symptoms (this is always when best to *ask* us about our conditions). Thereby we can speak most objectively and coherently and can provide advance information such as “this is something that might happen….” and “if this happens, here’s what you can do to help.”

A question I got from a high school student more recently had to do with missing class and having the reason be believed by the teacher. I suggested letting the teacher know about the condition and that it can cause absence from class and to provide this information up front so it’s not heard in the context as an “excuse.”

For my favorite tool to help disclose a disability, check out the “Splatvocate Map” under “Download free tools” on my Splat page.

And don’t forget I literally wrote a book on this: Talking Splat: Communicating About Our Hidden Disabilities.


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