Foggy's "Invisible Illness" Support
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How to shake off nasty comments from person at support group?

Hi everyone,

I was able to go to a 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.

Any suggestions very much welcomed. Thank you.

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I'd be really hurt too and would find it hard to "shake off" her comments.

She sounds like she is really only interested in her own stuff, wanting to take more space and got angry when she wasn't given as much floor as she felt she deserved. She's obviously not an empathetic person however it sounds like much of the group seemed like it would work for you.

I imagine that she won't be back after storming out half way through and reckon going back one more time to test the water will give you the opportunity to get the support you deserve.

Good luck.

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Hi IdasMum,

Thanks very much for responding. I think your advice is sound. I definitely got the feeling that she could have talked about herself the whole time quite happily.

I think I'll give it another go in the coming months.

Thank you for your kind response.

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Hello.

For many years I too would have been shaken, hurt and upset by such tasteless and ill-informed comments, but I now practise something called neuro-linguistic programming and nobody, but nobody, how the power to make me feel anything other than what I choose to feel. Long term illness, such as CFS, is so much more than the symptoms – one of the truly devastating things about it, is what it can "make you feel" about yourself and why should anybody be allowed to "make you feel" any worse by making judgements on you, no matter how ill that other person may be feeling.

You could ring the coordinator of the group and ask advice about your experience. There are surely other people within the group who would support you. Alternatively start your own really local group with fewer kind, gentle and supportive people.

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Hi Sala,

Thanks very much for writing your thoughts. I've heard of NLP before but haven't really looked into it. I'll have another revisit, sounds like it works well for you.

I'm thinking about contacting the coordinator and yes I do think other people were uncomfortable with this lady and her behaviour.

I've been thinking about starting my own group but I'm not well enough. Maybe something for the future.

Thanks again for your suggestions

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Whoops I meant to type Salab, silly phone!

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I'd echo the previous comments on this. Also, I would contact the co-ordinator individually and raise your concerns about it. It is entirely possible that they are aware of something else going on, e.g. that she's done it to others, that she has some severe stress at home currently (not an excuse I know but it may at least explain her behaviour), etc. If they are aware of this issue they can watch out for signs of it happening again, maybe to someone else, and try to manage the situation a bit better. My thought is that she could be taken to one side and offered 1:1 support whilst the rest of the group carry on as a group.

You should not be concerned about being able to talk about your own issues in a support group for fear of someone else's comments.

But similarly I would suggest that we cannot control other people's behaviour, only our reaction to it. In your situation I would similarly have been upset by the comments. My response to such situations is probably not the right one as I would be inclined to answer her comment of "why are you even here?". Depending on my mood the response could range from "Why are any of us here? To seek support and understanding from other people in similar situations" to something significantly less subtle.

Just on the point of age. Being comparatively young with my health situation compared to others I have experienced a range of reactions when I tell people my health background. Most people comment on me being 'too young', but I have had some comments suggesting that I should be able to cope better with my health issues because I'm younger and as a result 'fitter'. I tend to bite my tongue at this remark as I don't particularly find it helpful. The flipside being as you said that I have had less time in my life when I have experienced better health and the prognosis for my condition being that I have a significantly shorter life expectancy. I like to think that people don't intend to trample all over my feelings or to ignore my crappy prognosis, but rather they haven't really thought about how it is for me before speaking. BUT I would expect a support group to be a situation where you are given the opportunity to be able to explain to other people how it is for you and for the rest of the group to accept your comments as they are without judgement.

I'd give it another go as you may just have landed on a one-off bad day for the group.

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Hi katfish,

Thanks very much for writing back to me and sorry to hear about your shitty prognosis.

I am thinking about contacting the coordinator as I agree that the situation could have been handled better. I think your suggestion of 1:1 for this lady is spot on. And I agree that even if people are having serious troubles it doesn't give them the right to behave poorly to others.

I agree that I can't control other people's behaviour. I did respond to her question with "I really don't think that you want me to answer that." Which was my attempt to stand up for myself without attacking her. I've thought of about 10 other things to say to her since then, always the way.

Your comments about age are so interesting. I heard a lot of comments at this group about how young I am, but it was mostly sad for me rather than judgey. I did find it weird though, at 36 I don't consider myself super young. I think you're 100% right about people speaking before thinking and not considering how it is for you.

I think I will give it another go in a few months.

Thank again for sharing your thoughts. The age thing especially.

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Hi, I would certainly have expected some intervention by the group organiser, but I have experienced a similar situation in a peer support group for depression. Before I could discuss the upsetting situation the group was disbanded, by text with just 24 hrs notice! I have also had an upsetting experience on this board which I complained about but was not satisfied with the result.

My attitude is to 'say'...." close the door after you" when people challenge me. As an assertive person , I have the right to say, "No", and, " I feel". No one has the right to question my feelings.

Please don't let this person prevent you from going to another group meeting which may prove helpful. Contacting a coordinator about your experience may help you.

Gentle Hugs, J.

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Hey J,

Thanks very much for responding. Wow that depression group sounds a little unusual!

Your comments about saying no and I feel are very interesting. I'm going to think about that more

Yes I think you're totally right about not letting this experience put me off. I will give it another go in a few months, hopefully I'll be a bit stronger then and it won't cost me 3 days back in bed.

Thanks again and gentle hugs to you too

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Hi,

The Depression group was run by an organisation called Team Work in Kettering, Northamptonshire. It finished in February last year and in February this year I had an email inviting me to visit an open day to discuss present arrangements. I told them to "include me out!" I think they are a part of the local county council.

I did a course of assertion training about 30 years ago and it has helped me with self confidence tremendously. Controlling types accuse me of being aggresive when I reply 'No", but they are just disgruntled bullies. I'm a giving type but have learnt where to draw the line and not be put upon and condemned for not doing what is expected of me. These people don't understand the restrictions which Fibro incurs on our lives.

Take care and be kind to yourself. J

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Is the group leader a trained professional? Or simply one of the group, but trying to coordinate it? If a trained professional, he/she should not have allowed such abusive behavior, but should have gently pointed out to that woman that she was not behaving in the spirit of the endeavor. Also, I would have asked that woman what SHE was doing there. Since she wasn't GIVING support, and didn't seem to be asking FOR support, why was she there? Also, why did she storm out? What provoked that action? Hang in there. Do go back and give it another try. I've been in support groups for many years; some in person but mostly online. There are bad apples everywhere, but they usually don't last long in any given group. Others can sense when someone's agenda does not fit the group, and eventually the bad apples leave when their personal agenda doesn't receive the results they desire. I have been in cancer support groups for 12 years where, as a 12 year survivor I mostly function as a mentor to the newly diagnosed. I am also more recently in several online groups looking for information on my more recent diagnosis of dysautonomia, where I am now on the receiving end of things. It is important for one to know why one is in any given group, as well as why the others are in the group. You are clearly there to GET help, and you seem to know that's what you are there for. A group leader is there to coordinate and give help. Long-standing members may still need help, or may be there to offer help. But NOBODY should be there to give criticism, especially not to new members who are trying to get their "sea legs" in a bad situation. If you had been there for several years without progressing in your insights and adaptations to your illness, then maybe it would make sense for someone to gently prod you forward a bit, but to attack a new member and say that new member doesn't belong, is not acceptable. The leader should not have allowed that to happen.

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Hi Judmilla,

Thanks very much for writing back to my post.

The coordinator is not a trained professional unfortunately. From what I understand the former coordinator retired last year and two members of the group decided to keep it going. Which I think is admirable, but I'm not sure that's going to work long term. The group seemed a bit rudderless to me.

She stormed out after snapping at two other people. One about some medications they were taking. One other member was talking about seeing a naturopath and feeling hopeful about some diet changes that she'd made on the naturopaths suggestion (basically more fruits and veg which makes sense). The storm out lady then started talking about naturopaths are too expensive etc. The member then said well it's my money and my time and I want to try everything I can to try and improve my life and feel better on a daily basis. (I thought that was very clear and I totally agree with the statement.) The storm out lady then started ranting about how she didn't come here to be disrespected and spoken to like that. The other member apologized to her but the stormer was off and gone. Everyone seemed shocked and the member who'd apologized was very concerned that she'd behaved inappropriately but no one thought so. People seemed relieved that the stormer was gone, I certainly was. To me it seemed that the storm out lady wasn't listening to anyone and wanting to pontificate while everyone sat in silence. Very weird.

Interesting what you say about people leaving groups over time. The stormer did say that she's been coming to this group for 10 years so maybe she's had enough.

Your sea legs comment is great. Sums it up perfectly. I probably would have defended myself harder if I'd been there before.

Sorry to hear about your dysautonomia diagnosis. I have that with my CFS and it's tricky. Hope that you are finding the information and help that you need.

Thank you again for writing to me. Appreciate your insights.

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As I like to say, her reaction is "symptomatic of a greater underlying problem." Forget her.

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Rory,

That's gold. Thank you.

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Yes I agree that the problem is clearly with her and she probably should be pitied for being so unpleasant to you and to others. Like playground bullies she must surely be an unhappy person?

I have Sjögren’s, Hypothyroidism and RA plus some worrying neuro stuff. I’ve been unwell with autoimmunity since I was a child and am now 55. I was always being put down by my family for my unwellness and feeling disbelieved for years because everyone around me had it worse. This still happens to me a lot to the point where I don’t tell anyone what’s wrong with me unless I know them very well. I even had a ceo of a charity suggest that Sjögren’s was just a minor blip compared to her problems?!

In my experience people who come late to chronic illness are often the bitterest ones. Maybe they feel the loss of what they used to have more keenly - because they had good health for so long?

The only group I’ve ever attended was as a patient volunteer for a charity. We had a similarly sharp tongued older woman who used to gun for me often as the youngest member of this group, either face to face or by group email. I didn’t have deformed joints or very aggressive RA like she did but I had a very broad overlapping spectrum of autoimmunity with debilitating neurological symptoms they didn’t have so actually we were quits!

I finally resigned because I just kept being made to feel that I was the lucky younger one who ought to be pulling my weight more and I just wasn’t well enough to do this although I did a lot in my own way as they knew. I’ve had similar encounters with HU members over the years - even been cyber bullied for not having proper RA!

And I somehow even got same types of older women (a doctor, a judge and a disability officer no less!) casting same kind of negativity on me at my PIP tribunal the other day. They first humiliated me about my toileting problems, my medicine intolerances and my cognitive issues. Then they turned me down with very superior and defiant expressions on their faces!

Even my very elderly mother in law loves nothing better than to interrogate me about my health problems and then tell me at great length about her far worse issues!

I think it’s all about some kind of bizarre envy - but I’ve not managed to work out what on earth could make these people jealous of me because I walk with a terrible gait - use a rollator or stick seat and am hardly glamorous.

But I do know now it’s their problem not ours!!

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I’ve come across people like this before and can really relate to how hurt you felt. I agree with the comments about giving it another go and talking to the coordinator if it continues. To try and tackle it proactively, it might be worth suggesting to the coordinator that the group agree some ground rules, a bit like we do on Facebook groups and at the start of courses. I’m sure this has happened before and no one likes being treated that way. Having members agree to think before they speak and respect each other’s journeys might help alleviate this problem.

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Hi NotBertieWooster

You poor poor dear 😢. I am so very sorry you had to endure that Inexcusable treatment.

My name is Honeybug and I live across the pond in the USA. 🌹

I have been treated that badly (worst ever was being attacked by the doctor between the eyes with the rubber reflex hammer that knocked my glasses off of my face) before and it is absolutely is inhumane. Why on earth 🌏 was she ever selected to be there with such a cruel demeanor?

I have 60 different diagnoses at last count and I can’t recall the number of times I was dismissed or told I was crazy or a hypochondriac. I now say this to those naysayers:

You can’t see the air but you sure can feel it !!!

Followed by this:

I am like the the package one buys at the store. You pick the best looking one out. You shake it slightly to see if it makes undesired sounds. You buy it and upon opening it up and using it for the first time you discover it is defective inside. That is me.

Usually this is enough to command attention and shuts the mouth of the offender.

Feel free to pass these around to all interested.

Best wishes my dear I just prayed for you. God bless and take care

😊🌸 🤗💕xxx

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