After I came home from the “death session” (the cystoscopy that diagnosed Interstitial Cystitis), I found myself in a new predicament: I felt foreign. Like an alien in my own skin. My thoughts were broadcasting in German, or Russian, or some sort of combination of the two. I wasn’t sure what was happening. I wasn’t sure what I could eat anymore. I wasn’t sure what I could do anymore.
I simply wasn’t sure who I was.
When someone asked if I liked chocolate, would I say yes, because I did, or should I say no because now I couldn’t have it? I mean if you don’t know how to say yes to chocolate, seriously why keep going? It was rough.
A side note – I eat chocolate almost every night. One little square of dark chocolate from Aldi. It’s divine.
(So to everyone who is searching the forums and finding themselves in a labyrinth of fear, and believing there is no hope for anything delicious ever again: forums are terrible and the people in them are often wrong. Just because someone with your disease can’t do something doesn’t mean it’s your future. They’re there because they are struggling. Many more have gotten better. Don’t let their darkness become your own. Give them a virtual hug and then move on.)
Identity is defined as: “who someone is: the name of a person: qualities, beliefs, etc., that make a particular person or group different from others.” 1
After diagnosis, I think a lot of us wonder about our qualities and beliefs. What if everything we loved is something we can’t do anymore? Are we still ourselves?
I mean, I like to write. When I write, I link to drink coffee. If I can’t drink coffee, am I less of a writer? Or what if my disease affected my ability to type or hold a pen? Would I still be a writer? Do you see how disease can muddle this?
As I hobbled through psychologically/emotionally from 2015 to 2016, I learned that my own struggles were not exactly that. Apparently I wasn’t the first person to go through having chronic illness and even more astonishing to the self-centered person I had become due to pain and self loathing, I wasn’t the first person to look into why I felt the way I did.
Sociology researcher, Kathy Charmaz, wrote a fascinating paper on chronic illness and what it does to those who learn they have one. 2 She says that the beginning of a chronic disease attacks not only our physical self but also our sense of identity making us doubt our self-worth.
Does this sound like anything I have been rattling on about for the past few paragraphs?
I wasn’t sure who I was. Maybe you’re not sure who you are. Maybe disease even stole your name. You’re no longer <INSERT NAME HERE>. You’re the girl or guy with disease. You’re this shadow person and you’re lost inside of the grey. You’re in a state of identity limbo. It’s ok. I’m going to teach you how to reintroduce yourself to, well, you. It took me a manuscript to write it out well, but it’s actually quite simple.
You have to reconnect.
You have to give yourself time to do that, and you have to let yourself grieve along the way.
I am a person who likes immediate results. It’s why I love things like Amazon Prime, instant downloads, and mobile banking. It’s also why I hate working out. I do one set of arm reps and I am somehow surprised when I don’t see a bulging bicep in the mirror.
But, my friends, recovering from disease takes time. Start with this though: take time every day to reconnect to what moves you. I’ve written about it a hundred times, but it’s important, so I’ll say it again.
You have to reinvest in you.
How do you make a stranger your best friend? You have to spend time with them. So do that for yourself. You are still you. Believe that you will get back to you, and please don’t give up.
I’m still imperfect. I haven’t mastered it all, but I know who I am now beyond loving chocolate and I am actually thankful to IC for teaching me that.
I’m also exceptionally angry that it took some things that I won’t get back, but I had to grieve those things to get back to being me without them.
Who are you? What has disease taken from you? What do you want to take back? Please comment below and let me know how I can help.
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1. Identity [Def.1]. Merriam-Webster Online. In Merriam-Webster. Retrieved January 19, 2017, from http://www.merriam-webster.com/dictionary/identity.
2. Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, (2).