The Question I Wish People Would Stop Asking About My Dystonia


I’ve struggled with an invisible illness over the last few years and for the most part, have been able to hide my struggles outside of home and doctors’ offices. I used to put a lot of effort into looking “fine” while out and about, and as I’ve taken steps forward in my recovery I’ve had to do much less covering up. Currently, I still struggle with dystonia, along with central nervous system problems that result in motor control problems in my ankle. Because of this, my ankle is unsteady and I walk on my toes with a bit of a limp. I wear a brace on a daily basis to prevent more sprains and keep my ankle as protected as possible so I don’t re-injure it.

I’ve gotten used to it, but what I haven’t gotten used to are the comments from strangers asking “What’s wrong with you?” after they’ve seen my gait and brace. In my experience, most of the time the questions come from well-meaning people curious about why a girl as young as I am is having trouble walking and getting around. I understand their confusion and probable curiosity, but it makes me uncomfortable being asked by people I don’t know.

While curiosity has led to great discoveries and often intriguing conversations between people, my health is no strangers’ business. Just like you wouldn’t approach an elderly lady with a cane and ask “Why are you using that cane? What’s wrong with you?” asking a young person is no different. I’m quite aware that sometimes ankle injuries are a sports injury, and being as young as I am, some people may make that assumption, making them feel OK about asking with less thought about my privacy or comfort. Even so, I still find it inappropriate and bordering on rude.

When I’m out with my family or friends, having strangers approach me and proceed to ask is not only embarrassing, but even angering. Often I’ll shrug it off and respond with “it’s a long story” in an effort to stop the conversation, but occasionally someone will push harder for information, leaving me frustrated and upset. I already struggle with trying to keep up with the rest of the world while dealing with my current mobility issues, and do not appreciate being singled out for appearing different.

Please keep in mind that people with invisible or visible illnesses are trying to get to appointments, run errands if able, and enjoy time outside of the house just like you. Tubes, IVs, splints or braces, service dogs and mobility devices are just some tools people have to use to navigate life and in my opinion, should be considered off-limits for strangers to ask about.

Sure, if you see someone struggling it might be appreciated if you opened a door for them or helped them reach something on a shelf. Or if someone asks you for help and proceeds to explain to you why they are asking for your help, then it may be appropriate to ask a question if you’re curious and the situation is right. The difference is when someone isn’t asking for assistance, showing signs of distress, or talking to you about their struggles. Please don’t let curiosity get the best of you and respect our privacy.

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Thinkstock photo by Igor Sinkov. 

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