I was able to go to a CFS support group meeting this Monday for the first time. The coordinator is lovely and probably half the group seem like people I can relate to. There was one lady though who kept talking over everyone else, interrupting, snapping at people, raising her voice etc. She actually stormed out half way through the meeting which I thought was bizarre.
I gave a summary of my illness as requested by the group and after that this woman quizzed me about my sleep patterns (I'd mentioned that I take melatonin and find it very helpful) she asked "why are you even here?"
She must have missed the part where I said I was in bed for a year. And that I'm housebound and have to rest 16-18 hours a day.
She's in her late 60s and has had fibromyalgia for ten years or so. My severe CFS started when I was 32. She's had about 20-30 extra years of life and freedom over me.
Anyway her comment really hurt. I was gobsmacked that a question like that would be asked in a support group and that no one told her to pull her head in. I thought it would be a more sympathetic/understanding environment.
Do you think the group is worth trying again? I don't really want to speak with this lady again.
Does anyone have any suggestions on how to shake off nasty comments like that? I'm probably feeling more down as going out to the group was very tiring and I'm having post exertional malaise.
I only went to a local support group once because I found it a bit like you. It was a competition for who was the sickest. The only discussion was what benefits people were getting. No support just a lot of moaning. Never went back. Like you I can hardly get out so it’s an effort to go anywhere. Maybe try it once more and see if that woman turns up. There’s always at least one opinionated person isn’t there who spoils it for everyone else.
I found the same at a pain group - everyone wanted sympathy for how bad they were but no one wanted to take action to stop their condition. I didn't last long as I wanted to get well!
Thank you very much for responding and sorry to hear that you've had a similar experience. Did help me to read that though.
I've been wondering if because the thing that the group members have in common in is illness that makes it a bit of a downer.
In your other comment you mention online communities. Which ones have you found helpful? I'm new to the online stuff. It's taken me 3 days to bounce back after the group so I'm thinking online might be better suited for me. Thank you again.
Don’t take it to heart. I always think that when you are ill and look for support you meet some lovely people and some not so nice and when you feel ill you feel vulnerable and take things to heart which you wouldn’t have done as a fit person. My family say I have lost my fight and I have. Don’t like confrontation anymore so I avoid it now. This CFS forum is probably the best I have been on. The Mighty is quite good too. I have made a few friends online who I e mail and we share our moans and problems. Some things you can’t get family to understand like how come one day you are in bed and another you can walk around the block? Only a fellow sufferer can understand that. Send me a private message anytime you get fed up.
I would tell to the coordinator exactly what you said here and see what they have to say. I am a member of a couple of online communities that I find supportive . I looked at lots of different ones because, as Patdoyle says many were just competitions for "who was the sickest".
Not sure which online communities you use but could I ask you to spread the word about the #Millions Missing campaign on May 12th. millionsmissing.meaction.net/ I live in the South so am collecting stories for the one being held in Southampton.
There are loads on facebook , I have heard good things about ME/CFS POSITIVITY but I find facebook too active for me. I can't cope with loads of posts. The exception is "Meditation and your life with ME/CFS" It is a small group that meets virtually on a Monday evening. We use free video conferencing software to do this. This is a new group so we are just deciding how we want it to proceed. At the moment it is a mix of readings, meditation and chat.
For info about the latest research I don't think you can beat healthrising.org/ They do have a forum but it is not one I use.
My main "go to" place when I needed a chat was mypatientmatch.com/ but it is not very active at the moment. The lovely team that ran it had to give up and we are all just hanging in there waiting for developments. It has a super supportive culture because anything else was quickly squashed. There are loads of people still joining but they are not posting very much. It seems to happen that communities can drift if left unattended . It is still a good place to post questions because everyone is very knowledgeable but there is not as much fun stuff coming up as there used to be.
This is great. Thank you so much. I have looked at Phoenix rising before, mostly for questions about symptoms. Lots of information!
I also find Facebook a bit much. Don't think I've checked it in over a year.
Thank you for answering my questions and wishing you an easy day.
The group will be worth trying again as long as you stand up to this woman. If she is getting too personal you need to be able to say no. If she is picking fault in what you say put it back on her.
I can't see in your post what she said, (although you do mention her quizzing on sleep), I can't see what question she asked. It may have been that she genuinely missed the info on sleep the first time round.
The woman obviously has issues, (see the storming out), so I would urge caution around her. As for how to rebut a comment I'd need to know the comment but I tend to flip stuff back on people - "What EXACTLY do you mean by that comment?" "What are you looking to find out from that question?"
If they were nasty I would just say why are you attacking me? STAY CALM ask questions and keep putting it back to the person.
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Hi Raffs,
Thanks very much for replying and sharing your thoughts.
The question she asked me was "why are you even here?" (Not terribly welcoming!)
I think your rebuttal comments are excellent and I like that idea of turning the question back on them. I did say to her at the time "I don't think you want me to answer that question." I just didn't want a fight, plus being new in the group and not feeling well etc.
I agree with you that she did seem unstable. She snapped at two other people before she stormed out. And everyone else seemed to be avoiding her, not a good sign. I did disagree with her on several comments she made. It was all a bit weird. I'll be giving her a wide berth in future I think! I think it got to me because I was expecting a safe environment and I had shared things I never discuss with people.
Thanks again for sharing your thoughts.
The answer to that was simply "Because the voices in my head told me this is where I was to start my killing spree".
perhaps the lady was having a horrendous day with significant cognative problems. many people with m.e cannot function properly with groups sensory over load can make some people very angry with no real sense why .
Hi NBW, if I were you I'd let it go. She obviously has issues herself to be so rude. Pity her family. Ignore her and as you say, try it again & give her a wide birth, if she says anything again let her words be left in the air for her to listen back to. Really, some people are ignorant, whatever illness they have.
The truth is, we are all different, have different levels I too am a 'beginner' with CFS. I was diagnosed 2 years ago & buried my head in the sand. Now I'm a little worse having overdone it, pushed myself too hard. I'm learning to pace myself & learning how to explain to family and close friends why I can't do the things I used to (without seeming like a hypochondriac)! P
If i was going to feel worried about it I wouldn't go back. It depends if you are a worrier like me! But you could try once more & see if you can resolve it either ask co ordinator or talk to woman on her own at end if u feel she is normal enough. or even ask another member? they might think she is weird too & ignore her. big hug. disappointing for u x
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. It is still a good place to post questions because everyone is very knowledgeable but there is not as much fun stuff coming up as there used to be. 
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