Support Groups Are Not My Thing

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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.

 

3 Comments Add yours

  1. Hi-

    I think the power point that you saw was recorded at the patient conference that the Foundation for Sarcoidosis Research planned in partnership with Mount Sinai. The other presentations from that day are online also -www.stopsarcoidosis.org/videos. On our home page, you can sign up to receive our enewsletter so you can learn about our webinars and annual conference.

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    1. Basil Rene says:

      Thanks for the info and the link. This is the power point presentation that I saw and mistakenly thought that this sort of info was provided at their regular support group meetings. I will check the rest of the presentations. Thanks again.

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  2. Sweets says:

    I have often thought about support groups – not so much for my sarcoidosis, as I think that is pretty much under control for now, but more for diabetes. i don’t think I need “support”, but despite having a wonderful husband, having a condition does tend to make one feel a bit lonely at times – I guess in a way just to be surrounded by other people who just get it, without having to try to explain anything.

    I never have attended any though. I attended a presentation by a medical company a couple of months ago, and it was amazing for me how easy conversation was between myself and someone sitting next to me, because of it (but I think this can happen with anyone, anywhere, despite of it also).

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