The other day, I was at an outdoor gathering when I met some new faces. We exchanged classic small talk and along the way, we landed on the topic of my recent move (in case you hadn’t heard, I moved into a new home!). Our discussion bounced from unruly neighbors to community pools, but then, what felt like out of nowhere, I grew silent.
The couple I was conversing with mentioned a time in which they had a neighbor who utilized a handicap parking spot, but from their perspective, the woman didn’t seem disabled. My stomach immediately dropped.
The dialogue in my head went from “say something” to “ignore what was just said.” I stood there, like a dog with her tail between her legs and changed the subject.
The whole day, I kept thinking to myself, why didn’t I say anything? I felt ashamed, like I wasn’t doing my job as a chronically ill individual to educate others about disabilities that are not always apparent to the naked eye. Granted, I reminded myself that these were people I literally just met five minutes ago and I was a guest in someone else’s home. It felt inappropriate to bring up a personal subject at an informal get-together.
Before you go casting judgment or making assumptions, I think it is important to note that these new acquaintances were incredibly kind, friendly, and super personable people. Years ago, I would have been offended by their words, but living with myasthenia gravis for more than 15 years has made me realize that some people “don’t know what they don’t know.”
If anything, this was a teaching moment for me. Typically, I am the person who usually does stop to educate someone, as I have many times prior to this because I too have been accused of using my handicap placard inappropriately. But in this particular instance, I remembered that some are not as vocal as I am when it comes to their chronic illness. Some people intentionally choose not to speak up about their diagnosis, and that is perfectly okay.
When I was first diagnosed with myasthenia gravis, I could barely talk about it without erupting into tears. Today, I not only talk about it, but I write about it, advocate for others who have it, and support myasthenia gravis patients through my role at the MGA. While I could have said something as simple as, “Ah, well maybe she has a hidden disability,” without even mentioning my diagnosis, this brief moment in time taught me that as a chronically ill individual, I am under no obligation to explain or disclose my disease. It was a reminder to not judge people for those who are not as comfortable as I am to have these conversations. Perhaps as a social worker I should have spoken up, but it was an opportunity for me to be re-informed about something. We are all human, and I too am always learning how to handle life with chronic illness. Nobody’s perfect, and I’ll be the first one to admit it.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.