Take Steps, Be Heard

Erm... just saw that typo. Minor mistake. They still do great work.

Yesterday, I had the pleasure of attending the Crohn's & Colitis Foundation of America's Take Steps walk at Soldier Field in Chicago. Our team, the Incrohnables, led by the wonderful Angela, walked along the Chicago lake front with hundreds of others in support of further research into the cause of, and a cure for Inflammatory Bowel Disease.

While I have some issues with the walk, (the talk of "overcoming" disease that seems to crop up with these events is always a little strange... although I totally understand that it comes from a place of encouragement and caring) I don't want to talk about that right now. What struck me most as I walked alongside this incredibly diverse group of people, each in some way affected by IBD, was the importance of community and a support system.

Almost everyone there, as far as I could tell, walked with a team of people. Some small, some large, almost all of them (including the Incrohnables) wearing team shirts. The shirts, some of which made jokes like the team sporting shirts with picture of a toilet with the words "Sh!* Happens" written underneath, some dedicated to the memory of loved ones lost to IBD, each showed just how necessary a support system is both for IBD patients and for their family and friends.

The experience of living with chronic disease can be extremely alienating. It is such an internal experience, and it can be really hard to verbalize such an experience. However, I feel that the importance of the support of family and friends can not be underestimated in these moments of extreme isolation.
In my experience, it is impossible to get through life in general and especially through flares without someone around to lean on. It's little clichéd, I know. Doesn't make it less true.

The second thing that struck me, especially when walking behind the team whose shirts were dedicated to a lost loved one, was the toll disease takes on those closest to us. I know I often forget this. It is so easy to get wrapped up in the idea that my disease is my issue. It is easy to forget the fact that my disease effects those people I depend on most in very different, but no less real, ways. This is a really complicated area. Although it is easy to know, intellectually, that my body is my own problem, human relationships are so much more complicated than that. My family and some of my closest friends have seen me at my absolute lowest, and while they never really tell me just how hard that was for them to see, I know from personal experience that witnessing someone you love hit rock bottom ties you to them in an entirely unique way. You feel guilt and sorrow, and you suddenly feel a responsibility for their emotional and physical well-being. I do not really think there is anything to be done about these feelings, they just are. But I feel like, as the one with the disease, it is important to acknowledge just how much it means to me that they were/are there for me, especially when I cannot be there for myself.

Maracas!!