How do YOU define YOUR disease?
May 1, 2015
Gardner, Lynch, Turcot, Cowden, and Bannayan-Riley-Ruvalcaba, etc. And you'll learn about polyps, desmoids tumors, gene mutations, DNA mismatch repair genes, adenomacarcinomas, and many extracolonic cancers and manifestations. But is that really how our diseases should be defined? When speaking to friends or family members, is that what we really want them to take away?
For years, I had never given it much thought. I had an automated response that I keep on ready standby should the topic ever arise. "F.A.P. is a genetically inherited disease that causes polyps to grow in the colon, each with a 100% chance of becoming cancerous..." The discussion typically works its way through my colectomy and j-pouch construction and generally quickly gives way to a completely different topic.
I developed this response in high school around the time I underwent my aforementioned surgeries. I did so because I did not enjoy the attention and extra consideration. High school was not a good time to be different; it was definitely not a good time to be viewed as weak or fragile. And, honestly, I absolutely cringed when I heard the pitiful "Ah....that's terrible...You poor thing! Are you okay?" bit that usually followed.
So I developed my response, tested it, edited it, cull-
ed whatever didn't work, and repeated this process
until I finally got the desired response: "Huh...I
couldn't even tell you had a disease. You can live
without a colon? That's pretty interesting...do you
have a special diet? How do you use the bathroom?"
No pity given. No pity received. Then I practiced it
until I could say it without thought and with little
emotion. But that short statement is far from how I
could define my disease.
F.A.P. is the reason I entered the llth grade at 6'4"
tall and 110 lbs. It's is the reason I never met my
grandfather and why my father is no longer alive. It's why I find myself dehydrated and hospitalized anytime I get a serious flu-bug. And the list could go on indefinitely. But all of this is not how I define my disease. And truth be told, dwelling on such thoughts rarely, if ever, proves productive.
So how do I define my disease - FAP?
Well, while I cannot deny that these experiences have affected me over the years, the way I defined this disease was formed at an early age. My world view and approach to life are absolutely entwined in my early experiences with FAP and how it affected my father, grandfather, aunt, uncle, and cousin. I was engrained early on with the idea that my future would always be in question because of this disease. I have lived my life with the idea that I could wake up with polyps on my whatever, cancer in my wherever, and so on, and so forth. My grandmother literally programmed me from an early age to not want children for fear of this disease being my legacy. And because of that, I have never taken life for granted.
F.A.P. has always played a massive role in my decision making. It is the very reason I am constantly asking myself, "Am I happy?" It is the catalyst for change when the answer comes back, "No."
How Do YOU Define YOUR Disease?
This is how I define FAP:
Since the inception of the Hereditary Colon Cancer Foundation, I frequently find myself having to describe Familial Adenomatous Polyposis. It has, on more than one occasion, given me pause to ask how I define FAP. It's actually a quite interesting thought.
If you do a search online for any of the hereditary colon cancer diseases, including FAP, you are met with cold, clinical information. You'll read about the list of named syndromes -
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