There are approximately 1.4 million Americans living with Inflammatory Bowel Disease (IBD), including Crohn’s Disease. Yep, you read that right, 1.4 million AMERICANS. Now, this number doesn’t take into account the Warriors in other countries battling Crohn’s. Let that sink in for a little bit. That is a BIG number…yet it is missing several countries. Despite this big number, Crohn’s Disease and Ulcerative Colitis continue to be misunderstood or overlooked.
Today, May 19, 2016 is World IBD Day. In honor of it, I thought I would send a salute to myself and my fellow IBD Warriors. Fighting IBD is a hard, long, and never ending battle. So, today I celebrate those who are fighting. Also, I wanted to further my goal of raising awareness about this disease.
This morning someone asked me what does IBD mean to me. As I sit in bed typing, and think on that question, my mind races. To me, IBD means several things. Surprisingly, not all of them are bad things.
First and foremost, IBD to me means Crohn’s Colitis because that is my official diagnosis. IBD, to me, also means chemotherapy medications, specifically methotrexate and Remicade because that is what I put into my body to control this disease. It means worrying about the long term effects of cancer medications on my system, and whether my life will somehow be shortened. It also means missed opportunities, events, and precious time with family in friends. IBD to me, means a restricted diet, chronic fatigue, constant attempts to conserve my energy, constant joint and stomach pain, weak bones (specifically osteoporosis), worsening eyesight, mouth ulcers, periodic skin lesions, rectal fishers, unwanted weight loss, malnourishment, ridiculously large medical bills, judgmental looks from doctors or friends unable to understand, disappointment from family members when I can’t do certain things, and hair loss. But, Crohn’s has also meant some other things.
See, for a long time I saw my diagnosis as a punishment, but now I see that is not the case. While I cannot call it a blessing, because it’s not that either, I can call it motivation. The unpredictability of the illness has motivated me to live in the moment and do what I can, when I can, because I have no idea what tomorrow will hold. IBD, to me, is also courage. Courage to take risks. See, when you can gamble with your health by taking medications without long term data on their side effects…other risks in life seem so small. For me, personally, IBD is a reality check. When I find myself placing too much importance on superficial things, it manages to take them away forcing me to reevaluate. For example, I have always considered my hair as one of my greatest attributes. Well, any time I flare, my hair LITERALLY falls out by the fist full. So, I have been forced to reevaluate my definition of my “best self” and embrace life without much hair…which I do without hesitation. Now, even when in remission, I routinely cut off my hair to the length of a pinkie finger.
No two people with IBD will see it the same way. But, for me, it is not a death sentence or punishment. I chose to see it as mean, crude, unrelenting, motivator that I didn’t hire and can’t fire. So, I embrace it and let it make me live. What is it to you?