What We Want You to Know about Our Hidden Disabilities

12 Dec

I’ve interviewed and chatted with a lot of people with different hidden disabilities over the years, and when I ask them what they want everyone to know about their conditions, their answers rarely had to do with the conditions themselves.

Does this surprise you? Do you expect the things we want you to know are, “I’m sensitive to loud noises,” or “pasta makes me really bloated,” or “being in public makes my chest ache”?

Because most often, their responses skipped symptoms altogether and reflected interactions, perceptions, and expectations.

They say things like,

It’s not my fault, and I don’t want to be this way.

Worrying about it is always at the forefront of my mind.

It’s real. It’s not just in my head. And it’s not going away.

I’m not stupid; some things just take me longer.

I’m going through something despite how I look on the outside.

I wish others were more aware of what I’m going through.

Please check in with me, even if I seem like I’m OK.

I can’t control it.

They don’t seem to care that you know the details of their conditions, so while I don’t discourage you at all from searching the internet about the conditions—in fact when I see people making an effort to look up and understand what I’m going through, it warms my heart—I highly encourage you to ask us directly, “What do you want me to know about your disability?” Make sure you say “want,” not “need,” because it opens a much bigger door, and one that has squishy pillows and hugs and puppies behind it.

Also, if you do look up someone’s condition online, know that there are more “symptoms” than just what physicians identify and list. Symptoms may be left out because they haven’t been documented or the subject of a medical study. That doesn’t make them any less real.

And beyond the conditions themselves, there are also “outstanding symptoms,” and I’ve got an article on that here: 7 Symptoms of Our Chronic Illnesses that Doctors Forget to Mention

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