To the People Who Think There Is Always a Visible Sign of Disability

I see the looks I get when I hand a health care provider my Medicare card along with my private insurance card. I see, and sometimes hear, judgmental actions when I use a handicapped spot in a parking lot.

Most people have their own interpretation of what a person with a disability looks like. They seem to think there is always a visible sign. They picture a wheelchair or some sort of deformity. They do not picture a 20-something woman who has no visible signs of a disability. However, the reality is that many disabilities can be invisible.

When I first got sick, I never got those questioning looks. I had tubes that were impossible to hide, I was in a wheelchair and I had to have someone with me most of the time to assist with my daily activities. During that time in my life, I faced a variety of struggles. The one thing I did not face was random strangers wondering if I was lying about having a disability.

After four years of being confined to bed and a wheelchair, I was able to get the medication and physical therapy I needed to start walking. Even though I do not use adaptive equipment to walk now, it takes effort to leave the house. I work part time, I do my own grocery shopping, and I enjoy going out to eat with my husband. Some days, to get to do those things, I may need closer parking or some other consideration.

There is no one way people with disabilities look. Under the outside appearance of many healthy-looking individuals can be scars, dysfunctional organs, rare disorders and so much more. I wonder if there will be a day when people do not whisper and question if I am being dishonest.

My hope is that as we join together as a community, people will slowly become more
and more aware of rare and invisible diseases. In the meantime, please don’t question if I really need that handicapped parking space, disability insurance or extra day off. Please don’t doubt that I really do have a rare disease that limits me in many ways. And most of all, please understand that I am working hard to fit into a world that can often be difficult for me to navigate without a little help.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.