Don't Pity Me When My Invisible Disability Becomes Visible

“When you pity sick people, you disempower them.” — Claire Wineland

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

I fear being pitied so much, I had an entire conversation with my therapist about it yesterday. I fear being pitied and disempowered both when I get my service dog and someday when I start using some sort of mobility aid. You see, I am a fiercely independent person (often to a fault), and I worry people will look down on me. I fear people will begin to try to take my independence away from me of their own accord.

Honestly, I’m not as concerned about being pitied with a service dog. Dogs are cute and furry and inviting. If anything, I’m worried about people bombarding me and not respecting my boundaries once I get my service dog.

I am worried about people pitying me when I begin to use some sort of mobility aid, whether it be a cane, arm crutches, a rollator (walker on wheels) or whatever else. I know there are some people who won’t look at or treat me differently for using a mobility aid. However, I’m also gravely aware of the immense stigma visible disability holds in American and global society. The last thing I want is for people to see me using a device that looks medical and sterile and immediately feel sorry for me and change how they treat me.

Sure, I’m glad I’ll feel the need to do less explaining, less validating myself to others because my invisible disabilities will no longer be so invisible. I’ll also feel less compelled to push myself beyond my means physically.

Whenever those days come, whenever I get my service dog or start using a mobility aid, please don’t pity me. Please talk to me, not to my dog or cane or walker. Please treat me as you always have, or as you would any able-bodied person. If I need help, trust me, I will ask for it.