Throughout the day, I have posted about IBD, and IBD awareness- there are many blogs and foundations that provide support, education and connection among the IBD community. They give me ideas for blog posts, they give me feedback on blog posts, and while I am all about educating people about symptoms and treatments (and warn them of quacks), I think another aspect of the disease that often is underestimated is the loneliness that many people feel with it. And I know, because I am one of these people.
Now, I don’t want to exaggerate- as soon as I was diagnosed, my mother did everything she could to educate herself- she read up on anatomy books, she talked to doctors, she meticulously wrote down my blood test results, recorded stools etc. The research on Crohn’s in Germany had just started- many medical professionals believed it was a psycho-somatic disease (today we know that that is IBS), but at the time, the differentiation wasn’t made. We lived in the country side, and the only pediatric internist who was ready to take on my case was at the University of Ulm’s medical school, 200 km away- so regular trips there were made. No support group in sight. And while there were many members of my family with auto-immune diseases who served as role models, it still was different. I ended up not talking too much about my Crohn’s- not lastly to protect myself. A lot of mean things were said to both, my mother and me, during my childhood (and even today on occasion).
Then, for a long time, I was reluctant to go to IBD support groups, even though I could have done it- more and more popped up, and I moved to the US, where all things IBD seem to be less stigmatized (in my experience). I didn’t want to attend pity parties, and at the time, I needed to focus my energy on grad school. In Indiana, I was careful to make not too many connections, knowing I’d have to leave two years later.
And then last year, I finally went to one for the first time. What did I have to lose? It was a big meeting- there were over twenty people there. I still had my Picc Line in and wore a binder, and it was a weird experience. I had never been in a room with so many people with IBD. Yes, I was still the one who had had it the longest (what a shitty record to hold), and I felt intimidated. I remember, I lost my voice when I re-counted what had happened the last few months. And yet, everyone was encouraging and kind.
I try to go as often as I can, and while I participate, I still am uneasy talking about myself. What I have learned is that there is no “type” of person that gets IBD- it’s all ages, races (ok, it’s portland, so it’s mostly white people), different socio-economic backgrounds, and yeah- different forms of the disease, from me, to newly diagnosed, to dramatic surgeries, j-pouches etc. You’ll find those who need to speak fifteen or twenty minutes, but often it’s because nobody listens to them outside of the meeting. You’ll find people trying to analyze every bowel movement, because they just want to understand what the hell is happening to them. You’ll find people who do the Special Carbohydrate Diet, and while I am not convinced it does anything, I am happy that they feel better. On occasion, there will be a complete nut-job, declaring that his ulcerative colitis is in reality a candida fungal infection and he stays in remission by drinking vinegar (I had zoned out at that point). So in short: we are a diverse bunch of people, a mismatched community, with one goal: to lead our lives best as we can.
Here is the link to the CCFA Support group List
If you are in the Portland Area, here’s the info: