Dear Carolyn-Jean,

It’s getting very difficult to feel proud of myself. Former classmates ask me what I’ve been up to since graduating, and it takes me about three and a half seconds to answer that question with a “Not much”, that I push out as blithe as my conscience allows me too. Then I sit there, listening to them talk about new friends they’ve made, new places they’ve visited, these absolutely beautiful narratives they are creating for themselves with the newfound freedom of adulthood. I smile and congratulate them on their success, but I worry the envy is starting to unveil itself from underneath my expressions of admiration.
People who know me well, know that this isn’t where I wanted to be in this point in time. I talked big talk, filled with optimism and ambition. I wanted to be in Italy or Denmark, fulfilling my dreams of studying abroad through a program that I was more than ready to apply for. But now I gaze through the screen of my phone and view the photos and videos my peers post from their travels. It was my dream, and they’re living it. And that is a really difficult thing to sit with.
I was an incredibly grateful and content person, but I now feel myself overflowing with anger and jealousy, and it makes me feel even sicker than I already am. Did the universe think I was underserving of the future I desired so badly? Is this what I deserve? A body that’s cemented to tired familiarity and routine. A body that’s rejecting everything. Food, medicine, sleep. Have I been deemed undeserving of those things as well?
How is it that you no longer find yourself lying awake, during the nights of insufferable pain and nausea, circling that question in your head? You can look at someone who is abled bodied and achieving things you once dreamed of achieving and feel nothing but joy for that person.
It’s because you’ve shut down the comparison game. All the anger you felt towards your illness has been tranquilized by the act of accepting your illness and appreciating the aspects of your life that have been improved since getting diagnosed with an auto immune disease.
You no longer let your fear of sickness get in the way of anything you want to do. You take chances. You started going to festivals and concerts again, because you trust your body and the signs that it gives you. You make plans with people that you didn’t get to see much the year you were really sick. But you’ve also learned how important it is to find people who make an effort to understand your illness. You no longer feel guilty for having to drop out of plans at the last minute because of a flare up. Or for having to leave commitments early due to medication side effects making your body feel foreign. The people in your life have more understanding and grace for you than you ever thought was possible.
You have also developed more grace and understanding for yourself and your body. Understanding that there are things about the physical appearance of your body that you cannot change due to your illness and having to relearn how to be okay with the new appearance of a body you worked so hard to keep healthy. I tell myself that there are things out of my control, and I need to accept that. But I find that somedays I am still far from fully believing that.
When explaining all my emotions towards my illness to people, I have found myself coming back to the emotion of grief. This has confused some people, but not those who are also managing a chronic illness. They understand how painful it is to grieve things as little as favorite foods that we can no longer eat, to grieving the immense loss of the reality where my body would be able to sustain a pregnancy. It all feels like I am grieving the loss of a life that I haven’t even lived yet. But the fact that it is isn’t attainable anymore, causes enough frustration to begin grieving.
One day I won’t have to long for the life that I dream of having, because I’ll be able to be content in the one I am living inside of this body that’s been given to me. Our body that is teaching me so much about perseverance, optimism, resilience, and how to be grateful for every little moment of peace that shows me that I am still more than deserving of an incredible future.

To the future that awaits,

Carolyn-Jean Cox