When I was 14 years old, my world was turned upside down. I was sitting in the doctor’s office, barely able to explain my symptoms without crying, looking to the GI for answers, for a cure. Then, she said the words “Crohn’s Disease”, and “chronic”. I was 14, so naturally I wasn’t entirely sure what any of that meant other than what I had seen on my frantic Google searches. I didn’t fully realize what was happening until I heard “chronic means that there is no cure”. My tears intensified as I clutched on to my mom for dear life as various professional figures gave me information I couldn’t absorb. It was as if I was drowning; everything around me was a blur. I’m not strong enough to live my entire life with a disease, I thought. Why is this happening to me? Will I ever feel okay again?
I could barely move most of the time, let alone go to school. When I wasn’t at the hospital, I was laying down on the couch watching TV, until I inevitably had to go to the bathroom and suffer through debilitating pain beyond anything I had ever known. Needless to say, Handy Manny and the Mickey Mouse Clubhouse became part of my daily routine, giving me a few laughs in between my many emotional breakdowns. Somehow, through the tears and failed treatments and having to take corticosteroids just to be able to function, I managed to finish my school year on time. I was determined to go to school whenever I could, even if only for an hour. Looking back I’m not sure how I did it. I think I was on autopilot.
It was odd, because even though I was living with an illness from that point forward, I often seemed okay to the outside world, if a little skinny (I had lost a lot of weight as a result of my illness). Funnily enough, one time a girl I went to school with looked me in the eyes, knowing full well my medical condition by this point, and said I was lucky to be as thin as I was. I have no words to describe the anger and sheer disbelief I felt hearing that. I know her words were well intentioned, but they were incredibly ignorant. I have had to deal with these type of comments throughout the years multiple times. People accused me of skipping gym class for fun, not understanding that it took all of my strength just to sit in a classroom, so how could I possibly run track? Not understanding that while they were in gym class I was at the hospital getting blood tests. One time, out of the blue an administrator, with the nurse’s support, accused me of using my illness as a way of getting excused for being late in the mornings, even though the school was fully aware of my condition, and had medical documentation. Somehow certain individuals in positions of power still didn’t understand that mornings were the worst time for my illness (they still are). That often times I was vomiting up until two minutes before leaving home. That I wanted nothing more than to be on time but we started school at 8:15 every morning and I’m sorry that sometimes I’m going to be 20 minutes late because I have a medical condition. I guess they call them invisible illnesses for a reason. Too often, I shrugged ignorant comments off or kept my anger to myself, sharing only with those closest to me. Not anymore. I’m done being quiet.
Me, in 2011, shortly after my diagnosis
This May, I will be coming up on 7 years since my diagnosis. These past 7 years have been anything but boring. It took until the summer of 2013 for me to finally begin a treatment plan that worked for me long-term: an IV infusion every 6-8 weeks, coupled with immunosuppressant pills. Just this past summer I was able to stop the pills, and am now only receiving my infusion every six weeks. That’s without taking into account vitamins and supplements. Before that, things I tried either didn’t work, made me feel sicker, or stopped working after a year or so. I often felt like giving up, like there was no point because nothing would ever work. But one day something did. And that’s not to say that it’s by any means permanent. Trust me when I say nothing about Crohn’s Disease is predictable or easy. Even now, in Clinical Remission, I still have bad days. There are things I always have to consider; my disease being under control does not mean that it is gone. I still have to be careful with what I eat. Getting a cold exacerbates my symptoms at times. So does stress. The list of factors goes on. My normal isn’t the typical normal. It’s different and complicated but it’s mine. The fact of the matter is the bad days suck and that’s okay, even though it’s not okay.
I felt as though Crohn’s robbed me of my youth, of my teenage years. That feeling has never fully gone away, and I don’t know that it ever will, but I also know that a lot of my strengths come from the challenges I have faced, and will face in the future. Crohn’s Disease is a part of me, but it’s not all of me. I am a theatre major, a writer, a TV junkie, a sister and daughter, a friend, and more. I am a warrior. And for those of you wondering what somebody with a chronic invisible illness like me might need from our friends and family: it’s not unsolicited medical advice or pity or you trying to solve our problems. All we need is for you to believe us when we say we aren’t feeling well even if we look fine to you, for you to be there to support us when the weight of the disease feels like too much for us to bear. To every friend, family member, educator, and person in my life who made an effort to understand these things: thank you, truly.
Me, Friday March 2nd 2018, getting my infusion
Pictures obtained from:
My personal collection