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Social Anxiety and M.E / CFIDS Has anyone had similar problems?

Discussion in 'Lifestyle Management' started by redrachel76, Jun 2, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    Welcome redracheal :)

    Its quite understandable that you've gotten social anxiety with getting this illness so young, missing out on dating etc. Also it is hard meeting and communicating well with others when one has this illness.

    I myself have Aspergers on top of being mostly housebound.. so making friends is so hard. (Nanonug.. interesting to hear you say you probably have Asperger's.. Ive notice you probably had it due to your posts for a while, it does show).

    I actually used to be okay with making the odd friend before I got ME but since Ive got this illness and been housebound for so long etc, Ive lost all my confidence in that area of socialising with people. Confidence in this area is going to take me a very long time to build up again esp since Ive had many bad experiences with others due to my health stuff.

    I met my last few boyfriends including my current one, online and became good friends there first before physically meeting them.

    I suggest when trying to explain the illness to others.. to not make it sound like you only have one or two symptoms...
    eg add "I also have many other symptoms due to this health condition I have", so you can easily say other things too. Unfortunately with anyone who is truely interested in you, you probably will end up having to give them a bit more explaination of it all.

    You will get better at dealing with others and gain confidence with practice. See each person you try to socialise with as a learning experience no matter how it goes. Focus on how you learnt something from it so you can deal even better next time.

    Probably the best way now to get that guy off your back who believes he can just suggest something to easily fix you .. would be to send him a good list of the symptoms of this illness eg http://wwcoco.com/cfids/bernesx.html You can explain you have most of those symptoms or whatever. If you dont set him straight, he will just keep doing what he's doing and think he can help fix that one symptom and make you all better.

    Im fortunate as I do have a great psychologist who coaches me throu relationship issues at times and tells me how to deal with various things (due to my Aspergers I do need that help at times as I truely dont know at times what to do with things which would be obvious to others).

    Feel free to ask at the forum if you have a certain issue with someone you are stuck with and dont know how to approach as maybe someone here can give ideas.

    If you dont do chat... maybe that is an area you could practice socialisation in.. or join a political forum (seeing you are into politics) and practice chatting to people there. Work at your communication skills and gaining confidence, a little bit at a time.
    redrachel76 and silicon like this.
  2. redrachel76

    redrachel76 Senior Member

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    Thank you taniaaust for the list and tips. I see I made a lot of mistakes in explanations.
    I'll think carefully and to use more of those next time. I used to be more consise because explaining the whole thing used to be a real conversation killer and put people off. It's very hard.
    These tips are useful.
  3. taniaaust1

    taniaaust1 Senior Member

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    Seeing you are having a lot of issues with socialisation skills.. maybe even put off mentioning the ME/CFS when first meeting someone.
  4. iacyi

    iacyi

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    Just wanted to say that I'm so grateful for this discussion... When I see other posters mention socialising I feel like I am the only one who struggles with it. Although my CFS is more recent, I became very unwell on antidepressants as a child and into my late teens. It's left me pretty stunted socially, which coupled with brain fog is a recipe for awkward moments! :D I cope by trying not to care what people think, in fact I find it amusing how badly I must come across sometimes.

    Also I've been told if I want to keep my benefits I will have to see a psychotherapist to prepare me for getting a job. Back into the lion's den!

    I'm not good at picking out discussion topics when I have no real interests. Though, when I had more brainpower, one thing I did find kinda useful was to visualise whatever the person was describing. Then I could more easily pick up on the details they had missed out, then either ask or try to open-endedly comment on it. Just to stretch out a topic, hopefully without seeming too tedious.
  5. SickOfSickness

    SickOfSickness Senior Member

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    I would try and move onto different topics, only talking about my illness for a minute to 5 minutes at most. Especially if they don't already know good things about you. Once they know good things, it's okay to talk about some of the bad.

    :(
  6. Ocean

    Ocean Senior Member

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    I don't have anxiety about social issues but there can be a level of discomfort there that didn't used to be when I was healthier and could work. I think for me it's partly because my life is so different from the average person's that there is a huge disconnect there. They either assume my life is just normal like theirs, which bothers me because I feel that if I go along with their assumption, I'm basically denying the reality of my life, which I refuse to do. And if I do try to explain briefly any aspect of my life, that often seems to make people uncomfortable or they just don't get it anyway. And I want to avoid getting into too much discussion about my illness with the wrong people or getting unwanted suggestions, so that always affects what I say or don't say and tends to dampen my interactions in a way that I don't think would occur if I weren't sick.

    There are just so many emotional issues that come up when you have a strong level of disability and I think those also cloud our interactions, or mine at least. I have trouble with figuring out how giving to be to others, how giving I feel okay with others being or not being. When I got very sick I saw that some people I'd always taken interest in and supported expected me to continue to be supportive to them but they did not offer me the same attention, understanding and support, and that really made me reassess my expectations and how I want to interact with others. I haven't got all that sorted out yet unfortunately and it definitely affects my interactions and my feelings about it all.

    For me I don't get into a lot of detail at all when talking about my situation, and I've learned that there are few people I can really talk to about it. For strangers, I see no reason to get into it, I may say I have some chronic health issues, to explain why I don't work or something like that. As you get closer to someone then you may want to test the waters and say more as you're comfortable. If you don't want suggestions on health issues, though I think you should make that clear. If I don't want that from someone I just try to tactfully let them know that and tell them I'm working with my medical professionals and making my medical decisions that way.

    I think learning to be able to see things from others' perspective is important and it's important to try to do it, just as we hope others may do the same for us. Sure, we may never fully understand someone else's daily reality in the way those living it do but we can to some degree. Hopefully others can do the same for us. I think it all starts with listening. So many people seem to not really listen, and pay attention to and think about someone else's story.

    If you find you're anxious about how people may view your situation, it may be the case that they aren't even really thinking about it in many cases, because many people seem to be much more focused on themselves and not really giving thought to our lives they way we, as the people living those lives, might think they would be. I think that's true in many cases not just in relation to those of us with CFS/ME.
  7. redrachel76

    redrachel76 Senior Member

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    That can not be done because the first question someone asks you is "What do you do?"
    As in are you working? -It doesn't matter if that person is just a female friend, casual acquantance, potential boyfriend, psycologist, whoever... That is the first question.

    On the other hand, going through the whole list of symptoms is mentally hard for me to remember and also a conversation killer.

    It has to be something inbetween. That is what I find hard....on top of the anxiety.

    Someone with M.S or a recognised desease can talk about this to a therapist on how to present their disease to others and to socialise while sick or get rid of social anxiety caused by being sick.
    I can't go to a therapist because M.E is not recognised as a real disease where I am. Therefore I am using this thread to get some pointers.

    Sickofsickness has a got good suggestion and the webpage of symptoms was a good suggestion. I've already sent it to that man that kept sending me pain killers he found on the internet to "cure" me. It's kept him quiet so that is good.

    I need to read Ocean's post again when my brain is working a bit better. I can identify with her first paragraph especially the " level of discomfort there that didn't used to be. I think for me it's partly because my life is so different from the average person's that there is a huge disconnect there."
    I need a bit of time to read the rest. There are some points there.
  8. Ocean

    Ocean Senior Member

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    I did write a lot didn't I? ;)

    I don't think you need to share a list of your symptoms with others, unless you want to and are comfortable doing so. I personally am not except in maybe rare instances.

    But I don't have a problem saying something like "I'm not able to do such and such due to my health." I don't feel I need to go into details and my experience is that most people really aren't interested in that anyway, but I do think it's useful to make clear what my limitations are as a result of my illness if it's relevant to the interaction.

    For example getting together with a friend I may want to make clear I can't do a certain time of day because of my health issues or that I have to keep plans tentative because of my health. I don't need to go into detail but I can let them know that for health reasons these are my limitations. They can choose to accommodate them or not. Some people do and other don't. I guess for me, with many people it's all on a "need to know" basis what I choose to tell.

    When some asks what do you do you can just say I've been having health issues so for now I'm dealing with that and not currently working. No need to get into it beyond that in my opinion.
    taniaaust1 likes this.
  9. Wayne

    Wayne Senior Member

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    Good mention Nanonug.

    Hi RedRachel, this book was one of the most influential and helpful books I've ever read, and can't help be think that you may find it quite useful, considering some of the difficulties you mentioned. The title made it sound like this might be about different kinds of manipulative techniques to use, and it took some doing for me to get past that. But I soon discovered that was not the case, and that this book contained some very valuable and foundational communication and social tenets.

    It's been many years since I first came across this book, but I continue to look at it as the book that started turning me from a rather self-centered way of looking at life, and learning to try to put myself in other people's shoes. What a concept! The author mentions some pretty universal principles about people in general, such as: people like to be talk about what interests them; people like to be appreciated; people like to be complimented (in a non-manipulative manner); people like to be helpful (if they can); and so much more.

    Once I grasped some of these principles and started using them, I found it so much easier to communicate with people in a sincere and honest way. I would ask them questions, either about themselves, or their interests, that I was sincerely interested in. Taking the attention off of myself (and currently my difficulties with ME/CFS) made social interaction so much easier. These days, if somebody asks me how I'm doing (and I'm either not doing well or don't want to talk about it), I just make a quick comment, and ask them something about themselves. It invariably leads to an exchange that is much more easy to deal with, and which I usually come away with feeing better, just for the social interaction.

    I've often thought this book should be required reading for all grade school students, with refresher courses along the way through school. The western cultures most of us live seem to foster a bit too much self-centeredness, and anything that can alter that is a positive in my opinion. For pwME/CFS, with rather limited options for social interaction, I honestly feel incorporating some of the precepts in this book can help us optimize the abilities we still do have. As you can see, I would highly recommend this book! :)

    Best Regards, Wayne
  10. SickOfSickness

    SickOfSickness Senior Member

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    Yeah it's easy to scare someone off if we want to.

    Yes I agree about Ocean's post, the first paragraph is similar to my experience and probably most of us, if we ever have to meet new people.

    Also in Ocean's last post, I agree, I tell them when it seems right, and it depends on the circumstances I met them, and what kind of person they are.
  11. November Girl

    November Girl Senior Member

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    So true! It took several years of marriage for me to figure that out & for DH to realize that I did NOT want him to fix everything. Women feel definitely disrespected when that happens, when what they want is to be understood. It makes relationships a lot easier when both parties understand this about the other!
  12. taniaaust1

    taniaaust1 Senior Member

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    I should of explained what I meant better. You dont have to tell people you have ME/CFS when you first meet them, there are often other ways around the questions they ask.

    Eg rather then telling then you have ME/CFS and then trying to explain all that (which is always hard trying to explain ME/CFS esp when so many misconceptions out there) ...
    to the question "What do you do?" "What work do you do?"
    You can just say something like "Unfortunately I have a chronic illness so currently cant work thou I'd wish I could". (avoiding saying ME/CFS)
    Often people wont take that line convo then further, thou if a person is really interested in you they still will which leads to the next quote below.


    I would never try to go telling another a whole list of symptoms. If they are really interested and wanting to know. I either send them to a good website which has a good list or I give them a list Ive photocopied from online for them to read thru later. (I do this both to doctors and to others Ive met as well).

    There is great info from online which can be used.

    or you can avoid talking about your illness on a first meeting with someone who is asking to much about it, just by then changing the topic away from your illness, by just saying... "I'd prefer if we chatted about happier things".
  13. mellster

    mellster Marco

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    I concur - you will likely be faced with suggestions for solutions every time, this is how we work. If you want just empathy, you need to say so ;) On the (good) flip side you know if he sticks around with "annoying" solutions, he is likely interested :)
  14. redrachel76

    redrachel76 Senior Member

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    I can't remember exactly what I took when I did Pimental's protocol. I just bought the book when it came out and did exactly what was in it. If Neomycin was in then I would have done it. (I seem to have lost the book so can't check now. :( ) I don't think the stomach problems have cause the M.E in my case. I only got my digestive problems 4 years after I already had M.E. I got them after going to Dr Myhill doing her full protocol. I took EPD injections from her and carried on even after I felt worse. I was naieve in those days and believed in doctors more than in my own feelings.
    So since my illness predates the digestive problems by 4 years, I don't think it is the cause like it was with you.

    Of course getting rid of the stomach problems would be a huge plus.

    I don't want to try Metamatrix. I live in Israel so it's harder for me to do. However the main reason I don't want to try it is that I once tried smoky labs. The experience was that it found things that *might* help, you go to the doc, he doesn't recognise it. So you're forced to decide whether to take anti fungals or weird drugs on your own for risk or not. Never mind the hurdle of getting a prescription and buying over the net. It's O.K if you weigh up the pros and cons and decide it's worth the risk, like I did with the Xifaxin. The smoky labs found blastocytis (not found on conventional hospital tests) and a bit of candida. The doc said blastocytis was harmless but I took the anti blastocytis drug. The symptoms got a bit better for a week on the drug then worsened 4 weeks later. Then overall no difference. Then I read on the net that normal blastocytis drugs given by every doctor worldwide are useless and you need some special combo for Australia that is really hard to get.
    I'm skeptical about Candida as an illness because it seems to get chucked at everything as a diagnosis and I haven't heard of a lot of people cured from M.E when they take anti Candida drugs. The moment that both a diagnosis and treatment is not recognised by your local docs, or even most docs overseas and hard to get, then it's incredibly difficult and only worth it if you are 100% positive that it won't harm you like I felt with Xifaxin.

    Saying all that - thank you for the link on Methane and IBS-C. I find that and your other links here on Pimental very interesting.

    I see that there is no placebo controlled *treatment* trial for IBS-C yet, unlike IBS-D. But it's encouraging that there is a breath test for it published now.

    BTW I have bought the Dale Carnagie book now due to yours and others recommending it here.
    At least it cheap and cheerful. :)
  15. redrachel76

    redrachel76 Senior Member

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    I just want to say everyone. For the first time in 9 years, I've gathered the courage to ask if a male acquantance is free to go out with. I think the comments here helped a bit. He might not be single anymore or want to go out with me but I am just happy that I tried and finally got the courage for it.

    If I get asked "What do you do"
    I will say that I don't currently work due to health issues. They always follow up with "What did you do before you got ill". I used to always feel uncomfotable then because I never worked because I was ill since age 15. I barely managed to finish school with the symptoms.

    If it was only meeting someone in a casual way and I didn't want any discomfort then I learned to say "I was a secretary" and then quickly deflect the conversation.
    If this meeting with the date goes through I don't know whether to do that or not. I'll probably have to. I'll see.

    Anyway, just wanted to thank people here for the comments. Feel free to add more, as they are useful to lots of us and I'll probably need them and come back here to read them.

    Tania - I find it hard to believe you have Asperger's, Your posts are really thoughtful and understanding.
  16. hurtingallthetimet

    hurtingallthetimet Senior Member

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    i use to be alot more social than i am now that im ill...my work was my social life..and i did alot with my family and friends...

    once i got ill though and couldnt work which devastated me, i was shocked that all my "friends" run for the hills...it hurt so badly.
    the worse is not being able to do alot wiht my family...im just too tired...i miss doing things with my kids...i miss work i miss having a life...no normal person gets out as little as i do and when i do its becasue im forced to..to get stuff for family prescrioptions take them to doctor dentist etc..run a few errands....never nothing a normal person my age would only be doing..its not a life anymoer..

    .ive been diganosed with social phobias and it is very very hard..the panic of if i have to go to walmart i will not sleep for a week before, crying and nervous, then the wierd way i speed walk that ive vented about before...i hate it...its like im running a marathon to get in and out as fast as possible and to buy the whole store as not to have to go back soon...though my body is in pain, and i know later i will pay for doing what a normal person does...go to walmart.

    i get nervous and panic...and God forbide someone speaks to me..i agree with whatever they say...i hope no one ever ask if i just robbed a bank or something...then later i feel so stupid for not thinking...im on medicaiton for the socail phobias..it helps some..the xanax....i couldnt live without it...im fearful of everything...of getting out...of traffic, of peopel, noise, lights everything..i didnt use to be like this....

    i see pysch doctor and consulouer...consuloer has helped alot....i finally was able to go to a few garage sales it wore me out later but she thought it would help and it did once i got over the panic...i thnik of it as shopping for my kids jeans or whatever like that...also someting that helped was i was told to focus on something when i start to walk to fast or panic...so if im standing in long checkout line i will read magazine there, or i will count something...or if im walking around and find myself speeding i will talk to myself in my head....i know it may sound crazy...but i feel crazy sometimes..

    take care hope you find something to help
  17. taniaaust1

    taniaaust1 Senior Member

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    congrats for working up that courage :)

    Its probably best to avoid saying that to him if it isnt true.

    Lots of communiation practice.. Im over 40 years. Also computer conversations are far far easier for those who have Aspergers as we arent trying to read body language which we often dont understand well.
  18. redrachel76

    redrachel76 Senior Member

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    I really deeply sympathise. I only have fear of men and talking to people generally face to face as "friends" or just acquantances. I don't have any fear of the social interaction of going to the shops or errands. I am terrified of seeing doctors and psycologists...due to past experiences. If I have a docs appointment I always take a anti anxiety tablet or sleep med the night before otherwise I won't sleep...and I often feel nervous and apprehensive about it a number of days before.

    I get the impression that it's the pressure of horrible physical symptoms of this illness and the friends running off that triggered off your anxiety?. Do you think it is that?

    I really hope it improves for you. I really appreciate you writing about this.
  19. Lala

    Lala Senior Member

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    Wayne likes this.
  20. hurtingallthetimet

    hurtingallthetimet Senior Member

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    thank you your very sweet, i hate going to the doctor also i think alot feel like that, espically the psych doctor and counselour..though my conselour has helped me a great deal and i really like her alot, i think i get most nervous with them not only for the fear of getting out but also becuase of the types of doctors they are and abuse and issues im not ready to talk about alwyas afraid they will bring up again which ive not been able to talk aobut openly before but working on it...

    it seems like after i got ill that everything was magnified a million times, and so many illness come with these illness..
    i tend to speed walk i think becuase of the pain, the anxiety of wanting to get in and out as quickly as i can, i crash horribly later but that seems to happen no matter what.

    as far as my friends running off, just having to quit my job and being so ill was very traumatic, i really htink i had a nervous breakdown, and i was shocked by how "friends" run off becuase i had stuck by them through some really major problems they were having and i really went out of my way to help them, and it was a shock how i was treated for being ill, but ive read where this has happened to alot of peopole and its sad...

    if i could get grocerys deleivered {its not offered where i live} and if doctors would call me and do visit over phone, id be happy to never get out, just in a very sad, depressed place, hate being sick, wish i could turn back time to before i was ill...im a shell of what i was..

    its great that you can get out to shop and do errands that keeps you social and i hope that you are able to over come the being terrified of seeing the doctors, i just wanted you to know your not alone.

    take care and have a great weekend

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