When I first was diagnosed with sarcoidosis, my doctor suggested I join a sarcoidosis support group. I never did. Then when I discovered I had heart failure, my cardiologist suggest I join a heart failure support group. I never did. Then when I discovered I had pulmonary hypertension, the manufacturer of my ridiculously expensive medication suggested I join a support group. I never did.

I did join a pulmonary rehabilitation class and when I went I was the youngest person in the class. The median age was 70. I have nothing against our world’s aged, but after a couple of weeks in class with these folks, the conversations were the stereotypical ones of everyone discussing which medication they preferred and what ailment they had today. It was a very negative atmosphere. They were all just waiting to die.

If you’ve read my blog, you would know that I avoid any negative energy, and I have avoided support groups for that exact reason. Although I am sure they are extremely helpful to many people, I would be afraid that it would be nothing more than a giant pity party. I am not sure that I would receive any support versus receiving sympathy, or rather, there would just be a bunch of people who are looking for sympathy.

I registered at a heart failure web site in the hope that I would find someone in my age range that I could converse with. After going through a long list of people, I came across only 5 or six in my age range. I emailed them all, and I only received on reply, and that person’s reply was basically get a heart transplant and get on with your life. Never heard from them after that.

I did try therapy, and that was a disaster. The nut job psychologist was trying to make me depressed and feel like I was about to die, so I just gave up on that. Now today I received an invitation to join a sarcoidosis support group. The person that wrote has been frequently reading my blog and thought I would be a great asset to her group. She’s in Alaska. I’m in NY. Not logistically possible, so I wrote her back and thanked her for the invitation, and told her that I would gladly visit if I was ever in the area. Her response was that her group is now just a gathering of everyone complaining about their ailments and she thinks that my positive attitude would help turn the group arround. My response is that the leader of the group sets the tone for the rest of the group, so if you want the group to have a positive attitude and look for ways to make their lives better, it has to start with the leader. Otherwise the support group just remains unsupported.

Composed by Basil Rene using WordPress for Blackberry

6 Comments Add yours

  1. Ah, some good points you raise. I did go to one meeting of a support group after my heart valve replacement; it was dire, all about what benefit to fiddle, how to get a disabled parking permit (when you can walk 5 miles around a golf course as one of them did!). I didn’t go back.

    Friends acroos the world through blogging… that’s my support group.


  2. Carol Wong says:

    I have some experience with support group. I belong to an on-line Fibromyalgia Group that is very positive, we share stuff not restricted to Fibro. I have a once a month group for Fibro also. I enjoy meeting people who have to deal with the same problems.

    I also belong to an MGUS group, that group is to share test results and try to get professional help for those who can’t find it.

    Also, I belong a Sarcoidosis on-line group. A good deal of that is cheering people on and trying to figure out what they should ask their doctors for.

    I think that is enough. I have been pre-diabetic for

    40 years but never joined a group for that also I now have glaucoma but no group, Also have major depression but medication takes care of me

    I think it mostly depends on how much time you have and how bad the symptoms bother you. If
    you don’t like one group-quit it and try a different one-they are all different.

    Also tried therapy. Didn’ help. they

    Carol Wong


  3. Awesome post. Do you mind if I ask what your source is for this information?


    1. Basil Rene says:

      my own experiences ….


  4. It’s interesting to see this point of view. I can’t say fore sure if I agree or not, but it is something I will think about now.


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