I am Alyssa. I am 23. As of this past July, I have Crohn’s disease. I have a whole diagnosis story, but I’ll spare you the gross details. I spent the first month after my diagnosis trying to get my body on track and relieved that I had a name for my combination of crazy symptoms. I was afraid. I woke up almost every night thinking that this would be the night that I would need to go to the hospital. The pain scared me. My whole life seemed to all of the sudden revolve around Crohn’s. Maybe it would go away. I mean, how could it not, with the 10+ pills that I was taking each day? I told a few close friends that I was sick, but I belittled my disease. I was so afraid that they would see me as “the sick one.”
Everything changed one Friday in August. I woke up that morning and got sick, real sick. I was dizzy, tired, and just felt generally crummy. I had a doctor’s appointment that afternoon and in typical fashion, I decided I was fine and could get through my day until then. I barely made it into her office before the doctor told me I needed to be admitted to the hospital. I cried. I’m 1000 miles from home and I have everything going for me.
Why did this have to happen to me, and why now? I was terrified. This was like all of my worst nightmares coming true. I don’t even want to know what my friend thought of me when she met me in the hospital lobby. If I could have seen myself then, I would have wondered which part of my body needed more attention: my immune system that was attacking my GI tract to the point where I wasn’t even absorbing water or my breaking heart and mind.
I was out of the hospital Sunday and back to school on Monday, like nothing happened. I tried to keep it all a secret. To those that did know, I told them it was no big deal. False. It was a HUGE deal! While in the hospital, I was put on an immunosuppressant, a biologic medication that is given intravenously, and a whole lot of steroids. In one day, my risk of getting cancer skyrocketed, as did my anxiety level. I can honestly say that I have never felt so alone in my life.
I started to comprehend what it meant to have a chronic illness. My previously bright and shiny future was now tarnished. I would need IV medication every 6 weeks. The chances of hospitalizations and major surgeries were very real. And worst of all, I was now so unconfident in who I was. I hated my body, inside and out. I felt like I had lost myself and that all that was left of my identity was Crohn’s. I was beyond angry that this happened to me.
I was good at pretending I was OK. Sometimes, I could even convince myself of it. It seemed that as long as I was busy, I was able to push all of this to the back and not deal with it. It was when I had a second to be alone with my head that I would have an outburst. I would cry and feel sorry for myself. During those times, I would look in the mirror and not recognize the girl staring back. Yet when anyone asked, I said I was fine. They stopped asking, and that made me feel more alone.
Last week, I was home for thanksgiving. I was met with the so-called compliment of “you lost weight!” and the so-called advice of “just change your diet.” Though the comments stung in all the wrong places, I just smiled. That was the wrong response! How could I expect people to understand how serious my disease is when I keep telling them it’s no big deal? How are others supposed to understand that there is more to me than being sick when I can’t even see past my Crohn’s? I was doing not only myself, but my entire IBD a community a disservice by belittling my disease. And that is when I decided I needed to change my ways.
In school, we always talk about how the patient is the expert. I am the patient, and therefore I am the expert. It is my job to educate. I want my friends and random people I meet to understand the seriousness of IBD. I want them to understand how scary it is to have a chronic illness. I want someone to be there next time I’m in my own head and worrying about my disease and my future. I want people to remind me that I am more than my disease, because it’s easy to forget that sometimes. All of this can only be possible through spreading awareness, and that is what I’m starting to do.
So let me introduce myself again: I am Alyssa. I am 23. I am a future physical therapist. I try to make everyone smile. I love anything chocolate. I am determined to be the best that I can be. Oh, and I have Crohn’s disease. Let me tell you all about it.