How does having a neuroimmune disorder change your identity, and how does that impact your ability to connect?
Having a rare neuroimmune disorder changes you. Human beings are good at a lot of things, but most spectacularly, we are gifted at adapting. There are things in life that you push and you push and you get through. These are things that you survive, and you hold the experience in the palm of your hand afterward. Everything we go through in life exists in your brain like a stone. Some stones are larger than others. Some are sharp, some are rounded and smooth. You can spend days and weeks and years of your life flipping that stone around, trying to decipher some meaning as to why it’s there. Maybe you blame other people. Maybe you blame yourself.
I don’t judge you for holding onto your experiences—I think everyone does. I’ve held my little stones for 15 years, and I’ve tried to arrange them as some rock mosaic, as something beautiful. I’ve written hundreds of poems, and short stories, and books about what it was like to be sick and to be young, and to grow up thinking that it could only ever go downhill. I’ve tried to make it all make sense, but really, all it ever was was a bit tragic.
Having my rare neuroimmune condition impacted who I was. It changed the trajectory of my life—I’d wanted to be a dancer, but that no longer felt like a dream I wanted to pursue after all that had happened. Instead, I found solace in writing. But I still think to myself, wow, I could’ve danced. I still see two parallel lives, the one I’m in where I have this diagnosis, and the one where nothing bad ever happened.
I do believe that this life is equally fulfilling, if not more so. The work that I’m doing, that others are doing, to connect and care and one day cure these rare illnesses is so valuable to me.
I do believe this life has brought me greater joy. Triumph in the face of adversity is so much sweeter, although there will always be moments I wish this never had happened.
Most importantly, I do believe having a change in identity has allowed me greater connection to those around me. Although not everyone gets it, our community does. And the moments that I feel so very seen can make the grief I felt when I couldn’t connect with my healthier peers begin to fade.
Connection is vital for mental well-being, and for the social aspects of recovery after diagnosis. Connection is a choice we make, to keep our metaphorical arms open to those around us, and to choose to articulate our worst days. Connection is the solution to the isolation we may experience after receiving our diagnosis.
The next few stories I’d like to show you changed the way I saw myself in relation to my condition. These stories encouraged me to redefine my personal identity, and to find some of my identity in the connections I could make with others. I hope they have the same impact on you as they had on me.
