It was hard for me too to see how friends and family reacted. Maybe they just don't get it, but it was (is?) hard for me to understand what would be difficult to get about someone's life falling apart on them. Losing your job, independence, health, income, etc. It's seems a no brainer that it would be traumatic and very difficult.
Social Anxiety and M.E / CFIDS Has anyone had similar problems?
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November Girl
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RedRachel, it looks like my 2nd post got lost. I just want to say that if you didn't have some social anxiety, it would be very strange indeed! Your life has not made socializing easy. I'm glad you're ready to take some steps. 
10-15 years ago, I was practically agoraphobic. I didn't want to leave my own yard without my husband or a trusted friend. Much of this was due to frequent crash state from overexertion. It took lots of little steps for me to get comfortable around people again.
10-15 years ago, I was practically agoraphobic. I didn't want to leave my own yard without my husband or a trusted friend. Much of this was due to frequent crash state from overexertion. It took lots of little steps for me to get comfortable around people again.
RedRachel, it looks like my 2nd post got lost. I just want to say that if you didn't have some social anxiety, it would be very strange indeed! Your life has not made socializing easy. I'm glad you're ready to take some steps.
It made me feel better when you said that.
I emailed a female acquantance who suggested me to go our with her brother in law a few years ago. I refused then because I was too frightened at the time. He even phoned here and I couldn't answer the phone!
My Dad answered the phone for me and said that I wasn't in. My Dad was quite annoyed at me for being so scared.
A few days ago I gathered up the courage to email her and ask her if he was still free. she wrote back saying "I'll ask him".
I'm waiting and there is no reply.
My Mum is saying, "Maybe he doesn't want you because you messed him around the first time" or "maybe they now realise you are ill" or "maybe he's found someone".
Lately I've been having sleep problems due to delayed circadium rythm from this illness, and the weather has gone really hot where I live so I'm half dead. I don' t know whether to push it or not.
Even if it succeeds and we go out, I am not looking forward to explaining that I can't eat or walk much. I'll have to think of suggesting something where we don't walk much and think of where there is a cafe where it's possible for me to have mineral water alone.
nanonug
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I understand. If you ever change your mind, here's the distributor in Israel:
http://www.feinerman.co.il/english/aboutus-judy.html
taniaaust1
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If you want to go somewhere for a bit longer time then just having a drink in a cafe.
The cinema could be a good place to enjoy yourselves, if you dont want to go somewhere which will involve standing or walking. It is also a place where due to watching movie, you wouldnt have to do too much convo if you went to Cinema (but of cause that would depend on how you are with noise and things like perfumes etc). If you are anything like me.. talking used to be way tiring for me.. and if you have issues with chatting.. it may be easier then chatting to someone at a cafe
Thank you for the suggestion.
I did once try a drawing class and it did help my anxiety a bit.
The problem was that I would be exhausted the next day because I'ed concentrate on the drawing. You have to sit upright for 2 hours minimum straight and there is the effort of getting there. It is surprising how much brain power drawing takes when you want to do it well. People did not talk to me much there because there are long periods of silence, like you said, but it really did help the anxiety with meeting people.
I am at the next stage now when I need practise talking face to face, not just meeting. In particular I need to practise talking face to face with men and dating.
I have to put that off for the next few months.
I have a hydrotherapy treatment this Thursday. I need the energy to see if that helps or not and seeing the annoying woman there who told me that fibromyalgia is helped by exercise. I've also put in an application for legal medical marijana for fibromyalgia pain and I am a bit scared of the interviews I'll have to go through for that.
I didn't get to meet the man they wanted to introduce me to. It didn't go through.
So I'm putting off the dealing with the fear of male dating for a bit.
I'll come back to it in a while.
It's good to hear you also dread the "What do you do?" question.
I did once try a drawing class and it did help my anxiety a bit.
The problem was that I would be exhausted the next day because I'ed concentrate on the drawing. You have to sit upright for 2 hours minimum straight and there is the effort of getting there. It is surprising how much brain power drawing takes when you want to do it well. People did not talk to me much there because there are long periods of silence, like you said, but it really did help the anxiety with meeting people.
I am at the next stage now when I need practise talking face to face, not just meeting. In particular I need to practise talking face to face with men and dating.
I have to put that off for the next few months.
I have a hydrotherapy treatment this Thursday. I need the energy to see if that helps or not and seeing the annoying woman there who told me that fibromyalgia is helped by exercise. I've also put in an application for legal medical marijana for fibromyalgia pain and I am a bit scared of the interviews I'll have to go through for that.
I didn't get to meet the man they wanted to introduce me to. It didn't go through.
So I'm putting off the dealing with the fear of male dating for a bit.
I'll come back to it in a while.
It's good to hear you also dread the "What do you do?" question.
Social anxiety is NORMAL.
I do understand that your situation, the life you've had so far, and your illness has made it a whole lot more difficult and complicated than it is for "normals", but I wouldn't get caught up in believeing in a "social anxiety" diagnosis.
"Social anxiety" is only a very, very recent "condition" to be invented - and it was invented by a drug company who had found a drug which relieved it a bit.
It's perfectly normal shyness - "medicalised" by a a drug company.
It's not a disorder! Honest.
I do understand that your situation, the life you've had so far, and your illness has made it a whole lot more difficult and complicated than it is for "normals", but I wouldn't get caught up in believeing in a "social anxiety" diagnosis.
"Social anxiety" is only a very, very recent "condition" to be invented - and it was invented by a drug company who had found a drug which relieved it a bit.
It's perfectly normal shyness - "medicalised" by a a drug company.
It's not a disorder! Honest.
Yeah, I would find an evening class exhausting too, but I thought I'd mention it in case you were feeling up to it.
If and when you feel up to playing the dating game, I find that it helps to meet men in situations where there isn't a dating agenda, like an evening class. That way you can get to know each other and maybe make a friend without worrying about it too much. If you ever feel well enough, a small voluntary job (maybe an hour a week) might be another way to meet men and/or make friends. I have met most of my friends through work or studying. I have several male friends, be comforted to know that we are all the same species
Like you, I find parties difficult, it's such hard work pretending to be witty and entertaining when all I really want to do is climb into a box in the corner and shut the lid.
I don't know if you've come across it, but the spoon theory is quite a good way of explaining what it's like to live with chronic illness - http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Good luck with the hydrotherapy treatment, I hope it helps.
Try meeting other people with ME. Is there a social group in your area? That way you would both be on the same wavelength and be able to support each other.
You would not need to fear the "what do you do?" question.
I used to help run a local ME support group and we had lots of romances and some marriages between our members. Particularly as young people get ME in their twenties so there are lots of single young people. And there are men with this illness - more than you'd think.
Seeing people get together and able to find love and support and understanding from each other was the best!
You would not need to fear the "what do you do?" question.
I used to help run a local ME support group and we had lots of romances and some marriages between our members. Particularly as young people get ME in their twenties so there are lots of single young people. And there are men with this illness - more than you'd think.
Seeing people get together and able to find love and support and understanding from each other was the best!
No there is no M.E social group in my area.
I once went to one many years ago.
It unfortunatly was not as good an exerience as yours was.
I was very shy about talking in front of all the people in broken Hebrew who didn't know English.
What bothered me most of all was that nearly all the people there could drive, work full time. There was one who was both at university and working as a security guard - I mean that's hard for healthy people. They were all diagnosed with fibromyalgia but I think the majority had fibro with just the tender points and without the exhuastion of M.E.
There was one person there with fibromyalgia secondary to Sjogren syndrome which is an autoimmune disease that attacks tear ducts and salivary glands. The woman with Sjogren could walk her dog every day and was more functional than me energy wise but she had all the tender points and then she was suffering with the tear ducts not working, which is really bad. But the thing is that I consider her illness to be completely different. I think we should not even be in the same support meeting. Sjogren is a different unique illness in itself. Yet the group was ignorant enough to consider us as the same.
I used to leave there feeling more lonely than when I went. I was particularly bothered by one fibro diagnosed girl who could drive1 full hour to the meeting and back. She also made 2 hour driving trips to go swimming in the sea twice a week. She loved the Fibro doctor I went to who believed in graded exercise and a "planned day". She followed his advice and got better.
Sorry to moan about that but I've been wanting to rant about it for ages.
It sounds like you were a much better social group organiser.
I once went to one many years ago.
It unfortunatly was not as good an exerience as yours was.
I was very shy about talking in front of all the people in broken Hebrew who didn't know English.
What bothered me most of all was that nearly all the people there could drive, work full time. There was one who was both at university and working as a security guard - I mean that's hard for healthy people. They were all diagnosed with fibromyalgia but I think the majority had fibro with just the tender points and without the exhuastion of M.E.
There was one person there with fibromyalgia secondary to Sjogren syndrome which is an autoimmune disease that attacks tear ducts and salivary glands. The woman with Sjogren could walk her dog every day and was more functional than me energy wise but she had all the tender points and then she was suffering with the tear ducts not working, which is really bad. But the thing is that I consider her illness to be completely different. I think we should not even be in the same support meeting. Sjogren is a different unique illness in itself. Yet the group was ignorant enough to consider us as the same.
I used to leave there feeling more lonely than when I went. I was particularly bothered by one fibro diagnosed girl who could drive1 full hour to the meeting and back. She also made 2 hour driving trips to go swimming in the sea twice a week. She loved the Fibro doctor I went to who believed in graded exercise and a "planned day". She followed his advice and got better.
Sorry to moan about that but I've been wanting to rant about it for ages.
It sounds like you were a much better social group organiser.
Hmmm...that doesn't sound like a helpful experience, I'm glad you got a chance to talk about it. It is very unpleasant to get in with the wrong group of people, particularly if you were expecting some basic understanding and empathy there.
I can only say that for me, belonging to a good, supportive ME group kept me sane. I dont go to that group now, but I still have friends I met there, who are my age and have been ill in the same way and for as long as I have been.
I think people become very alienated and disturbed when they can only talk to people who by definition, because they are healthy, or have different illnesses, cannot understand our problems.
I think social rejection and the stigma we carry, for being "ill" in an unrecognised way, is the most damaging long - term element of this disease. Human beings are social animals. Acceptance and recognition are vital to our wellbeing.
Can you try, in some other way, to get to know other people with ME? Not just on the internet, but on a face to face basis?
I can only say that for me, belonging to a good, supportive ME group kept me sane. I dont go to that group now, but I still have friends I met there, who are my age and have been ill in the same way and for as long as I have been.
I think people become very alienated and disturbed when they can only talk to people who by definition, because they are healthy, or have different illnesses, cannot understand our problems.
I think social rejection and the stigma we carry, for being "ill" in an unrecognised way, is the most damaging long - term element of this disease. Human beings are social animals. Acceptance and recognition are vital to our wellbeing.
Can you try, in some other way, to get to know other people with ME? Not just on the internet, but on a face to face basis?
I had a friend who found a very loving relationship, after her husband left her and her child, because he could not cope with the pressure of her illness. She was very ill.
However, once she got over the shock and rejection and started to feel more hopeful, she advertised in a dating page in a local paper as someone who was recovering from ME and looking for a partner/friend.
She met a very nice man, who she is still with.
I think the important thing was that she was open about her illness riight from the start, and so anyone who couldnt deal with sick people was not going to reply anyway.
If you feel pressure to present yourself as healthy you can set yourself up for rejection once the other person finds out, and that is why it is so stressful mixing with healthy people.
It is best to be absolutely open from the beginning, even though it takes courage.
I am sure you know all the precautions necessary if you do go onto dating sites. I havent done this myself, and I was surprised when my friend did, but she was pretty much housebound and couldnt get out to meet people.
However, once she got over the shock and rejection and started to feel more hopeful, she advertised in a dating page in a local paper as someone who was recovering from ME and looking for a partner/friend.
She met a very nice man, who she is still with.
I think the important thing was that she was open about her illness riight from the start, and so anyone who couldnt deal with sick people was not going to reply anyway.
If you feel pressure to present yourself as healthy you can set yourself up for rejection once the other person finds out, and that is why it is so stressful mixing with healthy people.
It is best to be absolutely open from the beginning, even though it takes courage.
I am sure you know all the precautions necessary if you do go onto dating sites. I havent done this myself, and I was surprised when my friend did, but she was pretty much housebound and couldnt get out to meet people.
August59
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I totally agree about being open with your disease. With me I'm have no doubt that my disease would be by far my biggest concern when it comes to entering into a relationship. Being open about it and getting it out right up front because that will be the big hurdle that has to be jumped.
I look at it this way too, if we can get over the sickness issue right up front and over the first few dates all the questions are answered. At that point if the other person is okay with everything then you are essentially in as close to a normal relationship that you could possibly be in. So much stress will be let go and you will have advantages of being close to someone . That's a good thing in my book!
Lolinda
J'aime nager dans le froid style Wim Hof.. 🏊♀️🙃
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I hope it is ok if I put thispost not to the original thread but to this one where it fits better content-wise. So I just wanted to share these:
I had just this combination (social anxiety and anhedonia) as a child. Anhedonia was so bad that when I worked damn hard to win a good price at a math championship (7th position allover the country, yeah
) I wondered myself why I am not happy at all, like others, just neutral. Socialanxiety so bad that I had no friend at all. Zero.The following worked for me for a complete resolution.
- I started writing down my feelings every day. First I was unable to write down anything at all. Just nothing came. I tried 3x per day. As a replacement, I wrote down things I wanted or just anything that came to my mind
- my first love (interestingly, I was capable of that, though mostly it was bodily for me) got my social confidence a bit better
- CBT: I discovered with the help of a shrink that I have seen a particular type of people as enemies threathening me. - these were just the most vivid, fun and strong people. From the shrink I also learned how thoughts cause emotions of anxiety even if I do not notice the connection, but itnis there. so I could start not thinking these thoughts. kinda "mental hygiene"
- and then the big big change: I tried the medication against kryptopyrolluria. it is a high dosage of P5P, zink and sthg else. Name: depyrrol. Sold by a Dr in the Netherlands. Now, I do not believe in kryptopyrroluria. I think the concept is scientificallynot sound. But the medication helped. Dramatically It was exactly as they described it: First day fully depressive. Next day the heaven on earth: the first time in my life, I had real emotions of happiness. So intensively as others talked about it. I was fascinated. It is like noticing only if it is light or dark when your eyes are losed versus seeing when they are open. Or a white-black picture turns into colorful. Since then everything changed. The medication did not do anything any further. I stopped it and retained mostof the benefit. though not as intensive as on tge first day. Since then things were really pleasurable. With CBT I was able to do things with people. After this I deeply enjoyed it and had many msny friends.
- My emotions continued to refine. Beforeall this I had known mostly fear. After all this I had happiness and others. But over the years the differences became more nuanced. Like your smartphone has billions of colours
Wish you all the same!!!
It is a new life.
I found this thread that I started 5 years ago.
I want to update that you helped a lot.
I read the Dale Carnagie book and that helped me.
Then I discovered that gluten avoidance helped my bowel problems a bit. I also upped the dose of Omega 3. I got a 5% physical improvement from that. The physical improvement helped me go out more..
I found another person with ME that I even got to meet a few times.
I slowly started dating, with advice I got from other threads in the love, relationships forum here.
I have my very first boyfriend at the age of 40 now.
Unfortunatly, He is not looking for anything serious, ...but that's OK , for the moment.
He is healthy but works a night shift so only sees me once a week, which is good for me because I am too weak for more at the moment.
I still have fears in dealing with doctors, strangers, and being assertive, but I never believed I would have got this far.
Just wanted to say thank you for the moral support. Maybe this will give hope to someone else with similar problems..
I want to update that you helped a lot.
I read the Dale Carnagie book and that helped me.
Then I discovered that gluten avoidance helped my bowel problems a bit. I also upped the dose of Omega 3. I got a 5% physical improvement from that. The physical improvement helped me go out more..
I found another person with ME that I even got to meet a few times.
I slowly started dating, with advice I got from other threads in the love, relationships forum here.
I have my very first boyfriend at the age of 40 now.
Unfortunatly, He is not looking for anything serious,
...but that's OK , for the moment.He is healthy but works a night shift so only sees me once a week, which is good for me because I am too weak for more at the moment.
I still have fears in dealing with doctors, strangers, and being assertive, but I never believed I would have got this far.
Just wanted to say thank you for the moral support. Maybe this will give hope to someone else with similar problems..
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Sorry but I disagree with you here. M.E IS a disease, it's no more just a set of symptoms than M.S is. Maybe you experience it differently, but in my experience there is a definite disease process going on that can't be listed as pain, fatigue or whatever else. I really hope that at some point before too long medical science will shed light on what is going on with the system that results in what is experienced as M.E.
RedRachel, yes sadly I completely relate. I was never the most socially confident person anyhow due to having a difficult background and being an introvert by nature, but I find social situations harder since having M.E for all the reasons you mention - people want to know what I do for a living, it's hard to explain how the M.e affects me, hard to make plans etc. For a long time I was quite agoraphobic due to the risk of feeling unwell while out. I'm still like that a little but my health is more stable so the anxiety has improved. Sorry I would say more but flagging.