The Mighty Logo

Being Comfortable With the Uncomfortable

The most helpful emails in health
Browse our free newsletters

Invisible illness is a term those affected use to explain that while we may look “put together” on the outside, inside we are falling apart. In my case, I am literally falling apart. I have Ehlers-Danlos syndrome hypermobility type. I used to be able to go out in public and blend in with the crowds around me. No one could tell that my legs felt like lead from walking, or my swollen chest was making it hard to breathe. Until now. Now when I go out I am followed by a giant billboard that screams, “Hey look at me, I’m disabled!” That billboard is my service dog Rembrandt.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

We have only been working together for five months, but already I have gotten used to the litany of questions and remarks I get from people while we are out. They usually are about his age, his breed (he’s a standard poodle), his height, what type of working dog he is, how cute he is, all of which are quick and easy to answer. Though lately I have been noticing a trend. An individual will see me working with him, asking for commands and rewarding with treats, and they will ask “Are you training him?”

I reply “No, he’s mine,” with a smile. Then it happens. Their face will change, eyes widen with shock and their expression softens to one of sympathy. That’s it. The conversation is over. The individual will then turn and walk away without any further questions or comments. I can understand a person not wanting to seem rude or intrusive (and I have no problem telling someone if they are) but is encountering a disabled person that uncomfortable?

Being comfortable with the uncomfortable is something that people who are chronically ill understand well. We often don’t like dealing with doctors, medications, and the gamut of problems our bodies serve us every day, but we deal with it. We are comfortable with ourselves; why shouldn’t others be as well? What is so jarring about meeting someone with a disability that some people feel the need to turn and walk away? I may never know the answer. Having been on the receiving end of the phasing-out period that occurs when friends no longer want to have a disabled friend, I may not want to know. Now that is uncomfortable.

I can advocate for the invisibly ill until I lose my voice, but there will continue to be those who remain uncomfortable with the disabled community. Until then, Rembrandt and I will continue to walk along, answering simple questions and waiting to find someone willing to push past the stigma and have a conversation.

Originally published: December 29, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home