I have always been an outsider. As a kid, I was a wicked nerd. I read Star Wars books and was bored in school so I wrote fantasy stories. I got moved to the smart class and people picked on me. I wore weird clothes and mostly ignored people.
I eventually started developing an identity through music. I was a punk. I am a punk. And I belonged there, but there’s a caveat – it’s a subculture characterized by the fact that none of its members fit in anywhere. It is a collection of misfits who like loud music and don’t belong anywhere else.
I am fortunate to have a lot of close friends (who were also generally misfits in their younger years.) But having friends is not the same as belonging to a community. Like I have these friendships and I love these people and they love me, but there are some things about me that they can’t relate to. Like being sick.
When I found the mast cell community, I was ecstatic. These were people who knew what I was talking about. They knew about the weird taste I get in my mouth when I’m having a mast cell reaction. They knew about the rash I get when I take a hot shower. They got it.
It’s hard though because once you find this community and you feel like you belong, when you can’t find anyone else who has had the weird blood marker you have or whatever, the loneliness you feel is swarming, engulfing. It’s really not something I expected to feel again at this point in my life.
There are a lot of things about my health that I keep off the general internet that would turn some heads. In some ways, I am very different from most other people with mast cell disease. While I feel that I belong to this community, it further reminds me that I am just never going to fit into a box. I am always going to be an outlier.
And you know what? So are a lot of other people. These diseases are so variable that it’s virtually impossible to ever find someone exactly like you. The person I have found whose profile matches mine the best is 2 years old and calls her PICC line a tail. She has a different type of mast cell disease than I do and has a disorder I don’t and I have a few she doesn’t. So like I said. It’s virtually impossible to ever find someone exactly like you.
My favorite thing about being a punk was going to shows and standing in the crowd waiting for the music to start. You get this buzzing excitement in your head and your heart pounds and then when the music comes up, you’re screaming lyrics with a bunch of other people you don’t really know but who are your friends in that moment, and who don’t really fit in anywhere either but in that moment, you all belong together.
It occurred to me tonight that the mast cell community is pretty much the same. We are all medical anomalies who banded together under this spotted banner. We are all misfits and sometimes for a little while, we belong together.