Life in middle school is hard enough. Kids can be so mean. But it was really difficult for me. I was 56 pounds and so skinny and so aware of my body.
I had all these things going on inside me, all this pain and the bleeding when I went to the bathroom.
I was really embarrassed. I wouldn’t even tell my mom what was going on.
I was also having a lot of accidents in school. I tried to hide it. I wouldn’t move in my chair or stand up or I would tie a shirt around my waist. But some of the girls noticed and they would point it out during recess.
That was a really difficult time for me. I was so ashamed of what was happening to my body.
When I was diagnosed, my doctor told me to follow a low residue diet and I remembered her saying something about eating white rice. That stuck in my head and that’s all I would eat.
That kind of created an eating disorder for me. I thought that I could only eat this one thing because it would make me feel better. I took it to the extreme. My family still teases me about it.
It sparked this focus on food and that only made things worse. I was feeling a lot of depression and isolation, just focusing on my health and what I should be eating and how I could look like the other girls.
In high school, I actually got a break from the severe health stuff. And that gave me a little bit of confidence, just being able to feel like a normal person and have friends.
That year I was in college, I just shut everyone out of my life. My friends stopped seeing me. I couldn’t even go out of my dorm room without being in incredible pain and having these accidents and losing blood.
I stopped going to classes. And I’d lie to people when they asked me how my classes were going. I would make up stories about what I’d done that day.
But really, I was lying in my dorm room, in pain, just falling apart. I had high fevers and my joints were so swollen I couldn’t walk. I would purposely start fights with my boyfriend so I could be alone.
I was so sick. I didn’t want anyone to see me that way. I ended up having to quit school and move back in with my parents.
Not long after I got home, I ended up in the hospital and I stayed there for six months. Things had gotten that bad. I had two emergency surgeries while I was there.
I got a blood infection and my temperature spiked at 106 degrees. My weight dropped to 82 pounds. All these bad things happened.
The next summer I volunteered to be a camp counselor at Camp Oasis. It’s a camp for kids with Crohn’s disease and ulcerative colitis.
And that was the first time I met other people with those diseases.
They were talking about it and I thought, “Whoa, there are these people right in front of me who have the same disease that I do, talking about things that I’d been through.
It felt freeing. This weight had been lifted off my shoulders, just being able to relate to somebody else and talk to them about Crohn’s disease.
I have gone on to become an advocate for patients and I get to speak at events and do other things that make me feel really proud.
I just started sharing my story hoping that I could help at least one other person out there who has gone through similar things. Knowing that I have been able to do that has helped me form some sort of purpose out of my life.
I’m amazed at the response I get to my blog, “Inflamed and Untamed,” because I never expect it. There have been a few times when people have been able to meet me in person and they’ve broken down and cried in front of me. They were just so thankful for the things that I’ve done and some have brought me presents. I’m so amazed at that because I’m just one person writing a blog.
To know that I’ve able to help people like that helps me because that’s what I wanted to do. What those people don’t realize is that they’re helping me, too.
The truth is, just about everything in my life has been dictated by my health. But it has also changed my life in great ways. One of those ways is meeting the love of my life, who also has Crohn’s disease.
Dan and I met three years before we started dating at an event called Get Your Guts in Gear, a bike ride for Crohn’s and ulcerative colitis. But we were both really sick that weekend and talked maybe twice to each other. After that we’d meet at events maybe once or twice a year. We were friends on Facebook.
It wasn’t until two years ago, when we were both going through a rough time, that we really started talking. I had just had an emergency surgery and wound up being in the hospital for three months. I was avoiding everybody and was so depressed. But then he messaged me on Facebook, and something made me feel I needed to respond to him.
He was in the hospital, too, so we were kind of going through the same thing. I felt like we were in it together. And after we both got out of the hospital, we saw each other at a birthday party for a friend of ours. And we really connected.
Then we became co-counselors at Camp Oasis. We were in it together again.On the last day of Camp Oasis, he asked me out.
That was one of the great things that has come out of a bad situation. Without being sick, I would have never met him. I had always said I never wanted to date somebody who has IBD. I didn’t want to be with another sick person.
I thought that would be too crazy and too difficult because everything would be focused on IBD. But while we both do advocacy work and sometimes we have to go to the hospital, we’re otherwise a normal couple. We have fun and we’re silly.
The best thing is that our relationship is not focused on being sick.