I am a rock, I am an i(bd)sland
In a stark contrast to Manda’s wonderful blog post about her family’s history with IBD from last week (if you haven’t read it, you should: https://www.girlswithguts.org/blog/2018/5/27/an-ibd-family), I wanted to talk about being the “lone wolf” of the family when it comes to IBD!
I consider myself extremely lucky to have a family free of serious illness (even though we are Ashkenazi Jews and you’d think there would be at least a couple more of us with IBD). There are some minor health issues scattered throughout; however, there is a very noticeable difference between my health and their health. I will forever get the “you really got the s**t end of the stick there” comment from people when they find out I am the only one in my family with autoimmune diseases. I have not one, but two- Crohn’s disease and type I diabetes. My health history is plenty long enough to make up for my family’s lack there of.
My biggest struggle with being the sick one in my family is the isolation that it creates. Don’t get me wrong, I have one of the most amazingly supportive families on the planet. I couldn’t have lab created a better group of people to be related to. Still, it is very difficult for me talk about my health at home. When around healthy people, especially my family, I try to be a chameleon so I don’t attract any attention to how I am feeling. This has conditioned me to keep certain aspects of my health to myself, almost to a fault.
Last summer I went back home to visit (I live in Texas, they live in New York) and to spend some time with my little brother while my parents were out of town. Instead, I wound up admitted to the hospital for a week with C. diff. This was a pretty big shock to everyone (except for me, of course), and forced me to open up about what has been going on. No one had seen me in the hospital since surgery in high school, so going from nothing to me in a bed with multiple IV’s, visible pain, and in an isolation room was pretty jarring for them. I felt bad keeping all of the hospitalizations and ER visits in Texas from them, but in the moment, I don’t want to worry anyone about something fairly routine. I now have a port that stays accessed nearly all of the time, and my family are serious beach people, so my time of hiding is coming to an end.
All of that being said, I look forward to being with my family. I love that I can go home, sit at my parent’s table, and push my disease to the back of my mind so I can be present and have fun. Obviously I am not always victorious over my Crohn’s disease, but I’ve created a system in my life where I fight a pretty good mental battle. I can’t go play hockey anymore, but I can totally spend the night watching The Bachelor or walking along the beach collecting shells with my family and know that no matter what my needs are or what my body is doing I am still the same child and sister that they’ve always had!
We would love to hear from those also flying the IBD flagship solo in their families! Comment below if you’d like to share your story!
Casey Flancbaum was diagnosed with ulcerative colitis at 22, which ultimately was changed to a diagnosis of Crohn’s disease the next year. She found the GWG organization and forum during a late night search for a support group geared towards women and is so grateful for the online community that she is now a part of!
Casey holds degrees in Music Performance from the Crane School of Music and University of North Texas, and is currently an active performer and teacher in the DFW area. In her free time, Casey loves to cook, garden, and spend time with her amazing husband, Samson, and three adorable fur kids, Jackson, Roxy, and Roscoe!