Coming to terms with the word “chronic”
I was diagnosed with Crohn’s Disease in November 2015, the day before Thanksgiving, ironically. You would think one would freak out when finding out they would be sick for the rest of their life, but I didn’t. After months of feeling my body decline and being unable to stop it, I finally had an answer to my pain, and based on the pamphlets the doctor handed me, I wouldn’t be in pain much longer. In the back of my mind, I always knew the medication I was prescribed would eventually stop working, but I’m an “I’ll cross that bridge when I get there” type of person. So I told myself I didn’t need to worry about it and I tried to live my life as normal as possible.
Flash-forward almost two years and it was discovered my medication was wearing off right before my senior year of college. I completely spiraled. After having three surgeries the previous semester due to a Crohn’s complication, I was angry at my life for constantly being put on hold. It seemed like just when I managed to escape one terrible cycle, I was pulled back into another.
When I was diagnosed, I knew medication changes, frequent doctor appointments, procedures, dealing with insurance, and surgeries were part of having a chronic illness, but there’s a difference between knowing it and experiencing it. It scared me when I realized I had absolutely no control over when a flare-up could occur, and after months of panic attacks, mental breakdowns, and some very dark thoughts, I found myself walking into my school’s counseling center, where I still go about every two weeks.
Even now, calmness scares me, because I know it’s temporary. Having Crohn’s disease means my whole life will be periods of calm followed by periods of uncertainty. Since being diagnosed, I’ve been writing a memoir about being a college student with Crohn’s. So far it’s gone through several revisions as I try to capture the complexities of living with a chronic illness. A few nights ago, I read through the latest version and realized some chapters don’t mention Crohn’s at all.
As I read over the pages I felt confused. If this book is supposed to be about my journey with Crohn’s disease, shouldn’t it be mentioned more? And then it hit me. Yes, this book is about my life with Crohn’s, but on a larger note, it’s about my life. Crohn’s is just a piece of my story; some days it’s a really big piece, while others, it’s not even a blip on my radar, and I think that’s one of the hardest things to articulate.
If you were to look at my social media accounts you would probably have no idea I have Crohn’s, because a lot of days I’m a normal college student. I go out with friends, I have an internship, and I’m in a sorority, but I’ve also undergone more medical procedures than most 22 year olds. I take medication daily, and every two weeks a family friend comes to my apartment to give me my HUMIRA injection. I stay away from alcohol and certain foods because I don’t want to risk the pain of my body not being able to tolerate it.
In my experience with meeting other people with chronic illnesses, I’ve found some try their best to ignore it, while others make it their complete identity. I fall somewhere in the middle; I’m incredibly open about it, but I try not to let it consume me. After these past few months, I’ve finally realized Crohn’s will always eventually raise its ugly head, but that doesn’t mean I have to stop living my life. Crohn’s is something I have, but it is not who I am.
Eryn was diagnosed with Crohn's Disease in 2015 as a sophomore in college. Known for her blunt personality, she never felt the need to hide her diagnosis, and was actually texting and Snapchatting her friends as soon as she left the doctor's office to tell them the news. In her free time she loves wasting her money at the movie theater seeing movies multiple times, hanging out with friends, and cuddling with her dog, June. Grateful to be part of the GWG community, she hopes to become an advocate for IBD and mental health and combat the surrounding stigma so people can feel confident despite their diagnosis.