As an ‘Invisible In-Between,’ I Frequently Experience Discrimination

If you have a neuromuscular disease like Lambert-Eaton myasthenic syndrome (LEMS) or another invisible illness, you’ve been there. You’ve driven into the parking lot of a grocery store or another venue and decided to use your handicapped placard to avail of an accessible parking spot. While you don’t need a wheelchair or walker, sometimes you don’t trust your energy level or walking capability to get you as far as you need to go. However, as soon as you emerge from your car, someone glares at you or makes a derogatory comment. You are a member of the “invisible in-between.”

I’m a member of the invisible in-between. I feel fortunate that I do not need to rely on a mobility aid. I plan my daily outings according to how I am feeling. I also factor in my medication dosages, rest periods, and the store’s less busy times. I hadn’t foreseen that I’d need to become an event planner merely to run errands.

Sometimes, I pull into a parking lot and know that the store is going to exhaust me more than usual. If I’m feeling particularly worn out I find my placard and park in the furthest handicap spot available, leaving the closest ones for those who have to haul wheelchairs or walkers out of their vehicles. On these occasions, I almost always receive glares and stares from fellow shoppers.

I recently attended a concert and had another experience of being one of the “invisible in-between.” I love concerts. Music is my escape from my medical battles. I now plan outings around my intravenous immunoglobulin schedule, checking my calendar when a show is announced. I make sure that it’s not scheduled during a treatment week because of the debilitating migraines I frequently deal with as a side effect. When I plan to attend a concert, I rest for days beforehand and spend days recovering afterward. But when the live music surrounds me, I don’t think of my battle within.

At the concert: I’m already tired, but happy to be there. (Photo by Dawn DeBois)

I don’t use handicapped seating at concerts, as I don’t need a wheelchair and don’t want to take seats from those who do.

At a recent Chris Stapleton concert, when I tried to take the shortest direct path to the port-a-potties, I was stopped by a member of the security team.

“You need to go up that way,” he said, pointing to a route that appeared to be longer than a football field. I replied that I couldn’t walk that far because I have a neuromuscular disease. He asked if I was in disabled seating and to see my ticket. I showed him my medical ID bracelet and told him that I didn’t ask for a disabled seat because I thought that those in wheelchairs should have priority. He looked me up and down and eventually let me through. I went through a similar interrogation on my return, and they had a volunteer escort me. This is the experience of being in the “invisible in-between.”

Why is it that if you have an invisible illness and choose to live as fully as your body will allow, society still discriminates against you?

Earlier, when I was at the airport picking up my friend who was flying in for the concert, I bumped into a former employer. I wish I could say that I felt supported at that job when my body was at its worst. Unfortunately, I had an issue with accommodation requests because some believed I didn’t look sick. The former employer commented on how well I looked.

I am fortunate to have friends, neighbors, and colleagues in the rare disease community who support and celebrate my accomplishments. However, I realize that not everyone is as lucky. Society should respect those of us who are the “invisible in-between” and appreciate our independence instead of trying to pigeonhole us.

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