I was diagnosed with sarcoidosis in 2006, but I never did seek out any support groups. I always had this impression of a group of people sitting in a circle, sharing. That’s not for me. I am a deeply private person. I don’t like going around even telling my friends and family what’s going in with me. Writing this blog is my therapy.
I saw an online presentation about the disease and for the first time I truly understood how this disease work, and it was a power point presentation done by one of the doctors at Mt. Sinai hospital at one of their support group meetings. I wondered if my whole perception of what a support group was all about was wrong.
Mt. Sinai had another support group meeting this morning and I decided to attend. It was not what I hoped for, but it was not what I expected either. There was no doctor in attendance because his wife was giving birth. There was an arts and crafts activity which I think was intended for people to speak while they created, but it is not what happened. It was in reality a disorganized mess with people trying to be heard in a large auditorium, and those in need of a pity party trying to get everyone else to attend.
I am not into pity parties. I can’t fathom why people need to have them and try to involve everyone else in them. But the one thing I did get out of the day was a deeper appreciation for my beautiful wife and her support, because I realized that a lot of people have no support from family and friends and they feel very alone with their disease. One woman said family and friends don’t believe her because she does not look sick. I felt for those people and wished they did find the love and support they need.
This was my first support group and more than likely, it will be my last. Really and truly what I want to attend is a seminar or conference and get info. Support groups are not for me.