Giving Up Control: My First Six Months Living with an Autoimmune Disease
This was — and I truly mean this with no sarcasm — a banner year. I moved into my own apartment (yay, no roommate), I started a staff position (yay, health insurance), and I found a self-love that I’d suppressed for far too long (yay, hot girl summer). This was an important year for me. Dare I say, it was one of the best I’ve had in a while.
And it’s absolutely buckwild for me to say that because this was also the year I was diagnosed with an incurable autoimmune disease.
In the beginning of May, three day after aging out of my parents’ insurance, I went to see a specialist to take care of what I perceived to be a stubborn case of hemorrhoids (and if you think that’s TMI, hold on to your butts). I went under anesthesia, blissfully believing the doctor would zap my problem away and my months of being plagued by a bleeding butt would be behind me. I woke up, sipped some apple juice, joked around with the nurse. I was giddy with excitement. Finally, a punctuation mark on this aggravating chapter of my life.
And then the word “colitis” came out of the doctor’s mouth, and that sunshine in my soul snapped in two.
The confusion clouded over me, and with the grogginess of the anesthesia I could only follow some of it. Inflammation in my rectum. Polyps, too. Possibly acute colitis, which can clear up with antibiotics, but if not… The doctor shoved prescriptions and lab orders in my hands and he sent me on my way.
Aside from that time I accidentally won an XBOX 360 instead of an iHome (long story), I’ve never considered myself a lucky person. I broke down crying on the sidewalk because I knew it wasn’t going to be acute.
I did three weeks of antibiotics. All the energy was siphoned from me, and all I could stomach was Carnation Instant Breakfast. My brother graduated college and I got so sick during the ceremony, I almost missed him walk.
The days went on. My bleeding came back. I knew it wasn’t acute.
And then came Literally The Worst Goddamn Thing I’ve Ever Experienced. The first Saturday in June, my body went mutiny on me. From that afternoon until Monday morning I was sitting on the toilet, folded over myself, involuntarily exorcising demons from my body every hour. It felt like someone was twisting my guts into a caduceus. I was too scared to move, too scared to eat, too scared to be alone. It was the sickest I’ve ever been in my life.
Monday morning. I hobbled to my doctor’s office. I went under anesthesia again, just for them to be sure, but I knew. It never was acute. It was always ulcerative colitis.
So, hi. I’m Claire, and I have an inflammatory bowel disease. I take an enema of medication every night and use suppositories twice daily. I had my first of probably many colonoscopies to look forward to. I don’t drink anymore and people look at me like I have three heads when I tell them that. I guess I’m technically in remission because I haven’t had any symptoms since July but I still pray for no whammies every time I need to go. I’m terrified for the day I flare up again — because that’s the thing with this illness I have now. It can flare up at any time without warning and, aside from stress and spicy foods, no one knows what truly triggers it.
I spent the first few weeks of this diagnosis grieving a life stolen from me. I had many a midnight meltdown over the inflammation spreading and getting worse. Needing steroids. Needing hospitalization. Needing a j-pouch. I didn’t feel safe. Nowadays, that fear has mutated into not feeling sick enough. The colonoscopy proved that I have the mildest form of colitis, and I’m responding well to the medication. Even writing this essay feels self-indulgent. When I think about my condition, especially after reading the sensationalized stories, I feel guilty that I have it so easy.
But instead of feeling guilty, I need to feel what I really am — lucky. Just because it’s easy now doesn’t mean it always will be, so I should be thankful that aside from those tumultuous first weeks, my life is otherwise unhindered.
You see, the future is absolutely fucking unfathomable. It’s fruitless for me to worry if I’ll still have my colon in twenty years or not. I can try to keep myself healthy the best I can, but ultimately it’s out of my control. And I think that was the biggest lesson for me to learn. I’ve always been an anxious person, and I’ve always had issues with keeping control. The most important moment of my life was when I finally put my hands up in the air and walked away and let my body ride off without its training wheels. And to my surprise, I haven’t stopped pedaling.
I’ve spent way too much of my life fearing the future; so much that I’ve forgotten to enjoy the present. For now, I am healthy. For now, I am happy. For now, I can bring myself to work and get lunch with my coworkers and grab (non-alcoholic) drinks with my friends. For now, I can laugh and smile and enjoy my life.
Maybe next year I’ll need to be hospitalized. Maybe I’ll never flare up again. It doesn’t matter. Only right now matters, and right now, I feel pretty okay.
