Right after I was diagnosed, one of the many things I cried was “What am I going to tell people?” My neurologist was quick to answer. “Nothing,” she said. “You’re not going to tell anyone but your closest family and your boyfriend. You’re just going to live your normal life.” The reason, she said, is I wouldn’t believe how much prejudice and misconceptions there are about neurological conditions. I have to admit, to her credit, that before my diagnosis I thought multiple sclerosis was a disease that only happened to people over forty. So, if I had misconceptions, it would be right to assume other people did too.
I ended up telling some of my closest friends as well as my family and my now ex-boyfriend, because the first year after the diagnosis was harder than I expected, and it came to a point where I just didn’t have the energy to make any more excuses. Reactions were very different: some people were great, other people, well-intentioned as they were, wanted to protect me so much I couldn’t help but feel smothered – and guilty because I wasn’t as healthy as they anxiously wanted me to be – and other people were just disappointing in their lack of support, seemingly wanting to distance themselves from “the issue” that was now a part of me.
In her book MS and Your Feelings Allison Shadday says “Keep in mind that although they may struggle to comprehend your illness, many people are simply unable to respond with genuine solace. Their apparent lack of empathy or understanding says more about their own inability to reach out than it does about your illness.” I try to remember this but sometimes I still get sad about those disappointments. And I still wonder how much I’m going to tell when I meet someone new.