I’ve had Ulcerative Colitis for ten years now.
Geez, I feel like I sound so old even typing it, like a decrepit old woman saying she’s got bad arthritis, wringing my hands over a cold mug of tea and a worn out afghan. Yet, it’s true. I’ve had a chronic disease for a decade now, having been diagnosed at the fragile age of 22 weeks after my college graduation. And I still have it (no surprise) and much has changed since then (pleasantly surprising). It’s not exactly an event worth an anniversary party but I couldn’t help at least giving it a blog post.
When I first got diagnosed I had an insane amount of anxiety associated with my disease. I literally had a “the sky is falling,” mentality, probably because I was entirely overwhelmed with the realization that I now had a disease I would be keeping for life. Best buds, except not. I had this nightmarish picture in my head of me, married, in my early thirties with two young kids, and I was dying of cancer in a hospital bed. I realize it sounds so depressing and fatalistic but that was very honestly the future I envisioned for myself. I couldn’t see past the facts in front of me, couldn’t hear the reassurance of my doctors. I was scared to death, of death, it seems.
It took years for me to wrap my head around the concepts that young people get sick; that people get diseases that they can’t shake; that life wasn’t just unfair to me but to everybody at some point in time. I was very entitled back then, thinking, honestly, that this shouldn’t be happening to me. I had a plan and a future and this disease was throwing it all off track. I had tried so hard to be strong and then I was made very weak. Prednisone-dependent weak. I had built a life of control and now I was at the mercy of my own haywire immune system. I was taking drugs with scary side effects and I couldn’t be 100% sure that they wouldn’t happen to me. I craved some foresight, some indication that everything would be ok but I didn’t get that. It took me years to understand that nobody does. I just had to watch it unravel, like every other person in the world. And as much as I hated it, it was probably the best thing for me.
I see things differently ten years later. There is less shock around my disease, less drama, less attention paid to it in reality. It has dissolved into the background more as my life has grown and expanded. I still struggle with anxiety related to my health (now more centered around who would care for my family if I couldn’t) but I’ve settled in, so to speak. Flares will come, drugs will change, insurances will inevitably give me a hard time. (Easy for me to say now because I’m feeling fine). There is something to longevity.
The anxiety was real but so was the persistence. My faith was nearly demolished but now it’s hardened into stone instead of wax. My marriage feels like a series of deep breaths, essential, life-giving, every changing yet consistent (in sickness or in health is no longer simply a romantic platitude). I’ve birthed two children, harboring life and sustaining it, carrying them, teaching them, hugging them, all with this broken body of mine. Back then, I wasn’t sure if I would ever make it this far. It’s reassuring to see that the past ten years have proved to be significantly better than my foolish nightmare.
Sometimes I wish I could reassure that young, broken woman ten years ago. You will find a man who not only loves you despite your disease but decides to carry that burden as his own. You will have kids, two perfect ones, healthy and vibrant and more hilarious than you could imagine. You will have bad days (or more accurately bad months) but you will learn to get through them and move past them. You will be poked and prodded and have all kinds of drugs marking your veins but you won’t be inhabiting a hospital bed at thirty two years old. You’ll make it through grad school and become a NP like you hoped. And while you will have learned that life is both so much harder and better than you thought it would be, you’ll be intact. Much more whole than you are now, and that’s only in ten years.
That would be a fun experiment but I still wouldn’t have listened to myself. I was young and scared and stupid, young twenties stupid (spending my money on an overpriced apartment, brunch and concert tickets- ha!). But now I can say that Life is wonderful! And I still have colitis! Ten years ago I wouldn’t have strung those two things together, especially the exclamation points. I can drink wine again and eat popcorn. I can run and play with my kids and although they will always have that box to check on their family history, I really don’t think my disease affects them very much. Somehow, through avenues that I can’t explain, I am limping less these days, no longer held back by some of those big, giant fears. Most days, anyways.
Will I still hope for better colonoscopy prep? Absolutely (and amen). Do I have hope for a cure for IBD one day? Markedly less so, but medicine is crazy so you never know what some nerd in a lab is up to right at this very moment. Do I have any idea what the next decade holds for me? Nope. Nobody does.
But that question matters less and less these days. I’ve got more important things to take care of.