I was diagnosed with FAP syndrome in 2005. Up until recently, I held on to this belief that it was a part of my identity. I blogged about it for a couple of years, I wrote a memoir, and most people who know me know that I have it. I thought that it was part of who I am. But I’m here to tell you that that’s not the case.
As you read this, I want you to remember that people who have FAP syndrome can have all kinds of things happen to their body and no two stories are alike. This is even true in my own family where I am a part of the third or fourth generation to have the disease.
When I was diagnosed, I was still able to safely delay surgery for a colectomy because I had 30 tiny polyps when I was diagnosed at 14. Instead of surgery, I took Sulindac and got another colonoscopy a year later. Over 10 years later, I still have my colon. I felt like I had to take advantage of this.
While I still have a colon, I deal with some other things. Like I’ve had something like 7 or 8 surgeries on my face. I get a lot of skin cysts and once I had this pesky bone tumor (osteoma) that grew on my nose. Surgeries, ultrasounds, and colonoscopies aren’t so foreign to me. Even though it’s an ordinary occurrence in my life now, I still deal with anxiety and depression. I may have all of these experiences but FAP syndrome doesn’t have me.
A few years ago I wrote a lot about living with this. I used to refer to it as “my disease” and now I know that it’s not “mine.” It’s not my identity. I look forward to the day when some researcher finds an effective treatment that doesn’t involve surgery.
As time passes, my outlook shifts. I like to think that it’s because I’m growing up. I’ve learned a lot over the past 11 years. Like I don’t have to “own this.” It’s okay to feel frustrated. For many years I tried to put a positive spin on everything that happened to me. But it wasn’t healthy. Then I decided that I wanted to make something good from my experience by helping people who are like me. It was fun for a little while. But it didn’t feel right to me.
About a year ago I left advocacy work because it wasn’t rewarding, among other things. It made me feel miserable. I wouldn’t change anything about this journey though. I’ve learned a lot from having FAP syndrome.
Today I spend much more of my time living and FAP syndrome is just a little part of my life. I know what it can do to my body and I’m prepared to do everything in my power to stay healthy. There’s so much to a person than the illness that they have. Many of my passions have been fueled by this disease. Like in my free time I enjoy meeting wish kids and helping grant wishes because I had a wish granted in 2006. I’m also working on a Master’s degree because I want to go into teaching. I have gotten to use some of my life experiences to teach students about resilience and I want children believe that anything is possible for them regardless of the challenges that they may face.
I’ll leave you with this. Strive to be more than your illness. I have FAP syndrome. But there’s so many more things to me than just a disease. Yes, this experience has shaped me. But it won’t make or break me.
I also have to give a lot of credit to my friends and family who have helped me along the way. I know that couldn’t do this alone!