These days, my weekly Parkinson's support group meetings are invaluable. I also benefit from monitoring several online support groups and blogs devoted to Parkinson's disease. I recommend in-person and online support groups for anyone dealing with a chronic illness.
Not all support groups are necessarily a good match for you. Here are some things to watch out for.
Beware the Fundamentalists
Many groups have old-timers who insist their way is the only way to deal with the illness. Fortunately, this isn't the case with my PD support group. But it did trouble me at some AA meetings.
Those meetings were dominated by longtime AA members who viewed the "Big Book" by AA's founder Bill Wilson the same way Supreme Court Justice Scalia regards the Constitution.
In some meetings I attended, old-timers insisted AA was the only way. They told newcomers to avoid prescription medicines like antidepressants. They urged new members not to consult therapists. A particular no-no was the use of pharmaceutical aids for alcoholism. That sentiment might have made sense in AA's early years when a variety of snake oils were touted as cures for alcoholism. But today, several medications have proved effective in decreasing the risk of relapse.
Another commandment from the "AA Nazis" was that you needed to attend at least two or three meetings a week or you would be struck drunk. For me, daily AA meetings helped get me through my first years of sobriety. But after about ten years, I decided I was becoming addicted to AA meetings. I thought I was afraid to be "home alone." Today, I treasure my "home alone" time.
These mandates from ornery AA old-timers aren't that much different from the "one-size-fits-all" medicine practiced by many in the established healthcare community now. Fortunately, there is a movement toward more personalized medical treatment that recognizes different people require different approaches. Today's AA meetings I'll bet are moving in a similar direction.
Other Support Group Red Flags
In AA -- where newcomers are especially vulnerable emotionally -- some meetings were prowled by men looking to introduce newcomers to the "13th Step" -- AA slang for sexual exploitation.
Here are some other things that may signal a problem with a support group:
- Promises of a sure cure for your disease or condition.
- Meetings that are predominantly gripe sessions.
- A group leader or member who urges you to stop medical treatment.
- High fees to attend the group.
- Pressure to purchase products or services.
- Disruptive members.
- Judgment of your decisions or actions.
- People may not be who they say they are, or may be trying to market a product or treatment.
- Online support groups can be used to prey on vulnerable people.
- Some online support groups may have an "in group" whose members have been sharing for a long time and are not welcoming to more casual, occasional visitors.
- Be careful about revealing personal information, such as your full name, address or phone number.
- Don't let internet use lead to isolation from your in-person network.