Coping | IBD
I’ve read a lot of my medical reports lately, and between obsessively comparing test results over time, I noticed a constant.
“Ms. Jones is a pleasant 28-year-old woman…” is in almost every single one. Every once in a while, a “very” gets thrown in before “pleasant.”
The first time I read it, it seemed like a nice pat on the back. The more I saw it across reports and across providers, the more tickled I got.
Are doctors instructed to write this in every patient description? How nasty would I have to be to not have the “pleasant” label? Would they really write something neutral, or even negative? My amusement turned more somber: Could my entire personality be reduced to this benign description?
Before my ulcerative colitis diagnosis, I was confident, independent, driven, and giving. With the diagnosis and surrounding circumstances came crushing anxiety, dependence, malaise, and self-obsession. Overnight I didn’t recognize myself anymore. That was a million times worse than the physical pain (which itself was pretty bad), and I didn’t suddenly revert back to my old self even as I took steps toward healing. My whole world was turned upside down when I got really sick. I moved across the country to spend the summer on my parents’ couch trying to keep my colon while the drugs and situation wreaked havoc on the rest of my body, mind, and spirit.
For a long time, just taking a shower or walking down the hall was an ordeal. Sleep had always been my safe haven, but I was lucky to cobble together even a few hours a night. I undertook a severely restricted diet, which took away just about all comfort foods. I typically only cry at funerals, but once the steroids were on board, suddenly I was shedding tears at sad songs and news stories. My ordinarily steady heart raced, sometimes all day and all night long, matching my uncontrollable mind.
A long-time workaholic, I couldn’t work for months and felt nothing but debilitating guilt for all the pieces I left undone. When I was able to return, I militantly limited my hours and tried to establish a new normal. And my mom, the selfless soul she is, moved back with me and provided support for nearly two months so I could work while my dad kept the home fires burning.
I upgraded my living quarters, adopted two kittens (best decision ever), and spent almost all non-work time resting since the fatigue from this disease and resulting depressive symptoms knocked me on my behind. All I could talk about, all I could think about was this disease, my treatment, my progress or lack thereof, how quickly I was going to have to dart out of a meeting to go to the bathroom, whether I was doing something to make my symptoms worse. I read every article, blog, chat room I could find – which only led to more conflicting information and realizations of how much worse my condition could be. I made ridiculous spreadsheets tracking symptoms, trying to make sense of this non-sensical disease. My constant search for answers just yielded more questions and uncertainty.
This has been anything but a pleasant experience. Had I really been a “pleasant” patient when I felt like my world was crumbling?
The only way I could start to let go was to take more control. My doctor, family, and friends all urged me to head to yet a third state for a consultation with the top specialists. I resisted at first, wanting to give a recently-modified treatment plan more time and not wanting to acknowledge the severity of the situation, but my fear finally gave way to logic. Five minutes into my first appointment, I felt this gigantic weight being lifted. I no longer needed to try to figure this all out on my own; they were in charge and were going to continue to “drive my bus” to a more normal life. Their confidence, thoroughness, and deep knowledge about the disease and latest and greatest developments inspired confidence in me. (And they took me off that restrictive diet, which instantly gave me more energy and made life a lot easier!) And with that, my mind was instantly free to think about other things – my future, sports, political issues, problems and solutions in my field, Christmas shopping – all normal things that were once regular parts of my life.
Since then, I’ve had some ups and downs. This team of experts isn’t a magic bullet. I’m still going to have days and even weeks that I am tired, uncomfortable, in pain – and cranky about all of those things. That’s okay. It doesn’t mean I’m destined to be that way forever, nor does it make me a tired, uncomfortable, cranky person. I’m also not the person I was before the disease, and that’s a good thing. I used to always put myself and my health on the back burner, living in a perpetual state of near or actual burnout. I’ve learned to recognize my limits, let myself rest, and not feel as much guilt when I have to slow down. It’s a work in progress. I used to try to keep my own problems quiet and take on everyone else’s.
This disease led me to really open up to some friends and family, and let them carry me when I couldn’t carry myself. I now find strength in being vulnerable, instead of priding myself on my stoicism.
For the first seven months, I let this disease define me. Now it’s time to define myself again. So who am I, besides a “pleasant” girl who now finds bathroom humor a lot funnier and isn’t quite as deathly afraid of needles and colonoscopies as she used to be?
I know what my next medical report will read: “Ms. Jones is a pleasant 29-year-old woman…” Well, at least there’s some presumed added wisdom in aging another year. Progress.
Christina Jones is a disability rights attorney and runs a law school clinic advocating for children with disabilities. A product of Silicon Valley, she now makes her home in Virginia. She loves watching baseball, listening to country music or a good audiobook, and curling up with her two cats, Colby Jack and Shelby Lynne.