Support Group: The Kindness of Strangers

I went to a Hep C support Group for the first time yesterday. I had wanted to go for a while, but my first attempt was aborted when I was so tired I just went home to bed right after work. The next time I tried was about 10 days ago. I discovered when I arrived that the group was on hiatus. Third time’s the charm however as I forced myself to go even though I was tired it was an experience I would recommend for anyone with the disease.

The group has been going on for years and had a wide range of people and stories. There was an individual who had been through the full 48 week treatment twice and relapsed both times. Another person was several months past the end of a 72 WEEK course of Interferon and Ribavirin. Another had been through treatment in the late ‘90s when you had to inject the Interferon 3 times a week and had been clear of virus for over 9 years. Others had not decided to do treatment yet (or even ever) and some were in the middle of it like myself. Even though the group was not large, it encompassed most of the range of experiences of people with Hep C.

It was a useful experience to hear someone in the room say, “Oh yeah, I had that,” or “Usually that one levels off after a while,” when you mentioned one of the effects of either disease or medication. It seemed that anything that anyone mentioned about how they were doing or what particular challenges they were facing now was generally met with either sympathetic understanding or a tip on how you might be able to deal with it.

I have to say that I was impressed with the matter-of-fact attitude (and humor) of the people in the group. I’m only 8 week in to treatment and I cannot imagine going through this for 72 weeks or 48 weeks TWICE. Yet everyone could joke (at some level) about what they had gone through in the past or were going through now.

It is also good to know that others feel the same frustrations you do. The brain fog was a major complaint of everyone in the room, followed closely by fatigue and general loss of energy. It was also heartening to hear from the folks who had completed treatment and cleared the virus that things return to normal. It may take a long time for you to find your brain and get your energy back, but mostly, you can come back and be yourself. It is a great comfort to know that there is light at the end of the tunnel, even if it is a damn long tunnel.

I don’t feel badly that I did not find a group earlier, but I am glad I found one and I intend to go back on a regular basis. I don’t know what it would have done for me to go while I was diagnosed but not in treatment. I think if I had decided to wait a while for western medical treatment and instead decided to try to manage the disease through other means, going to a group would have been a major benefit. It seems everyone has a strategy for particular symptoms and the group knowledge represented is quite impressive.

I recommend finding a support group to anyone with the disease. Whether you feel the need for emotional support or would like the ability to tap in to a great deal of experience and knowledge, you will definitely feel the kindness of strangers.