Flash Back Friday – Unsupported

Originally posted JANUARY 26, 2011

supportWhen 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.

2 Comments Add yours

  1. Maureen says:

    My friends son has just been told he has cardio sarcoidosis and the lungs as well he is 34. Prognosis isn’t good. That’s how I found you by just looking for information on the Internet .


    1. Basil Rene says:

      Maureen, I am sorry that you had to find my blog under such circumstances. I do hope that your son’s friend improves. I know each case is different with this disease, but my prognosis was not good either, and I improved so there is always hope.


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