My wife has an incurable, degenerative illness called scleroderma. We found a local support group that met once a month, and attended meetings for about nine months. My wife decided not to go anymore, because she felt like she wasn’t getting back as much as she was contributing. She actively researches her illness, and keeps a log so that when she visits the doctor, she has specific questions to ask. At support group meetings, she would share problems she had, and solutions that worked for her. But she began to feel like the others in the group weren’t really there to share coping strategies as much as it was a socializing opportunity. After a while, we stopped going.
So what is the purpose of a support group? Is it to share information? To socialize with others sharing a common challenge? Provide emotional support, a pat on the hand and a comforting word? What should we expect to get out of it? Is there any point in going if she doesn’t feel like she is benefiting from it? Are there alternatives we should consider?
Different support groups for the same illness can be vastly different from each other. My ex was on two different support groups (she’s a board admin on one of them) and has been active on others in the past…
• Some have a tone set by the rules and the admins, all business here, if it’s not about TheDisease don’t post it. No off-topic stuff. No personal fraternizing. You want that, go join a socializing board.
• Some are friendly boards with people who do get to know each other and do post off-topic stuff, but where the core activity is still coping and new discoveries, and where the people who are up on their research and know how to properly convert units or best time of day to get viable lab results, etc, are held in high regard.
• Some are very geared towards “we will help you have the strength to get through this”, especially those that are prayer-circle-ish, with lots of emotional support but less medical info or hard facts.
• Some are more of a clearinghouse for managing the array of doctors, hospitals, insurance plans, and other services. Who has been there? What is he like, will he prescribe ThatMed or does he push OtherMed? Hey everyone don’t go to FacilityX unless you like being billed for extraneous procedures. OK this doc is a good one but his office staff sucks and won’t fax you your lab results. Etc.
• Some are places to get AWAY from the disease. Oh, you’ve got it too? OK come in and let’s talk about other stuff. Virtual bar, whatcha drinking? You’re cute, you come here often? :giggle:
I can see online groups would have a much wider range of experiences, but I am talking about IRL groups.
IRL groups work the same way - they will develop their own ‘personalities’ over time (AA is a good example of this - if you’ve ever read any of the threads here about AA, there’s always a recommendation to anyone who is thinking about trying it to not give up if they don’t like the first group they go to - not all AA groups are the same).
It sounds to me like the group you went to just wasn’t fitting your wife’s needs. Maybe there’s another group that would - or perhaps she can start one of her own with her own guidelines for it in mind.
**Is it to share information? **- Yes
**To socialize with others sharing a common challenge? **- Yes
**Provide emotional support, a pat on the hand and a comforting word? ** - Yes
What should we expect to get out of it? I think this is the most important question. What you get out of it depends on what you need. A big part of a support group is the “you’re not in this alone” feeling that comes with meeting others with similar problems. You might need to shop around for a group that fits your personality. If this particular group wasn’t working for you, stop going and see if you can find another group, maybe in a different town or part of the city, that has a group dynamic that more closely suits your needs. Maybe you’ve just outgrown the need for group support. I’ve been to various support groups that worked for a while and then eventually, I didn’t need to go anymore for various reasons. It is very much a personal choice.
**Is there any point in going if she doesn’t feel like she is benefiting from it? **
No, if she doesn’t feel like it’s helping her in whatever way that manifests, emotional support, sharing of information, etc. then why go? She might find it rewarding to share her information with others if she’s really good at research but if she’s not getting anything out of it, it is a waste of time.
**Are there alternatives we should consider? ** Maybe start your own group? If what your wife wants is a group for which sharing information is a priority then see if you can find a group or start a group with that goal in mind. If she starts her own group then she can structure it however she wants and lay down the ground rules to the members as they join. Or, if the group she’s been attending mostly fits her needs but just needs a few tweaks, maybe she can talk to the group leader and see if the structure of the group can be changed to include a time for information and research sharing and a time for socialization.
Best of luck to you and your wife.