Support Group Redux

In a previous post, I described going to my first support group meeting. It was a good experience and my intermittent appearances at other meetings of the group have been useful both for the emotional support of others who have undergone the same experience and for the information they can pass on about their coping mechanisms for getting through treatment. There are times when the group can be a bit trying and the other day was one of those experiences.

Before mentioning the circumstances that made it an infinitely long 90 minutes, there was one piece of anecdotal evidence we discovered as a group that we have not seen described in the literature as an effect of becoming symptomatic Hepatitis C sufferers. Several of the individuals at the meeting had been diagnosed with Hep C relatively recently. As they related the stories of how they had ended up being tested for Hep C and the symptoms that led them to their doctors, one of the repeated statements was that they had experienced shortness of breath. After the third individual mentioned this, the moderator of the group mentioned that she had that same symptom at the time she was diagnosed and asked the group in general whether that was the case for them as well. Of the eleven people there, eight, including myself, related that previous to and continuing after the diagnosis, they had experienced shortness of breath and some difficulty feeling that they could draw a complete lungful of air. As I said, anecdotal evidence to be sure, but we all wonder whether that is a common experience of Hep C sufferers. You learn something new at every group.

You also occasionally have to suffer through a meeting with a plethora of difficult personalities and this was one of them. The first individual to speak related the experience of undergoing treatment twice and failing both times to clear the virus. It was entirely the fault of incompetent doctors, unresponsive nurses, delayed treatments, bad communication, shoddy lab work, you name it and this individual named it as a reason treatment had failed. After listening to the ranting for about 10 minutes, and knowing the doctors named were among the leaders in the field, we realized that we were experiencing directly some of the reasons this person had not experienced a successful outcome.

Three other individuals at the meeting clearly do not get out much and used the meeting to ramble on about their personal lives before, during and after treatment without offering much information about their experience with the disease. Having worked in retail at various times, I have experienced this before. Individuals often came into the store and, perceiving the clerk as a captive audience, proceed to spend no little time describing their personal problems at length until you find a way to cut them off. In the case of the support group, these individuals are usually not hard to deal with, but the number of folks doing it at this particular meeting just ended up being a bit more than I was prepared for.

Finally we had the new age proselytizer. Every person who related symptoms of the disease or issues of treatment was given an herbal nostrum to try, a meditation regimen to use or a dietary modification to make to help with the preservation of the liver or the mitigation of side effects. I have an open mind about strategies for treating disease. I have investigated a number of alternative therapies for a wide range of conditions and found some of them to be efficacious, but when someone insists that I must drink filtered water in order to lighten the toxic load on my liver but does not seem to understand that vastly more toxins are inhaled by a typical individual every day in any major city than they will ever get through treated tap water, it certainly raises my level of tension. Likewise the insistence on a vegetarian diet, organic foods and particular methods of preparation sounds great until you run into the situation I described as The Everything Tastes Like Crap Diet. Then I think it is far more important to just find things you feel like eating and eat them, than worry overmuch about the specific balancing of your diet.

I could go on, but then I would turn in to individual number one at our meeting. I will continue to go to the support group as it is indeed helpful and there is always new information to discover. Just remember that the occasional meeting can find you clock watching and hoping for the end as opposed to suddenly being surprised by the custodians and realizing it’s time to give them a chance to do their job and wait to continue the discussion till the next time.