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Has anyone tried not talking about your illness over a long period and seeing if it helped?

Discussion in 'General ME/CFS Discussion' started by Willhm, Sep 26, 2013.

  1. Willhm

    Willhm

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    Hello,

    I do not mean this in a way others might (ie. it's in your head if you stop talking about it you will forget it's there). But just sometimes for me when I discuss it with family members sometimes it is positive and sometimes it really leaves me down.

    It is constantly on my mind but less so when I sometimes wake up at night (and can fall asleep quickly afterwards and not feel sick during it, were as other times I wake up I feel more anxious) so I haven't had time for it to necessarily seep into my brain so much, which is what it does once I wake up in the morning and makes me feel worse.

    Obviously not having stressful things on your mind is helpful but I was just wondering if anyone had tried a total ban about talking to others about it and (much much much much harder) not thinking about it as much.

    I was thinking of trialling it in my family and seeing if the first thing (not talking about it) would help not thinking about it and maybe reduce stress and anxiety levels.

    I know this could be particularly hard for those who need to ask for help because they feel unwell or maybe don't even have anyone to ask for help so I they don't verbally talk about it anyway.

    It was just an idea and I was thinking of giving it a go and seeing if it helped (although I may have some appointments coming up which I am sure will be on my mind and be talked about, I will just have to see....)
  2. xchocoholic

    xchocoholic Senior Member

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    I've definitely found that NOT discussing my illness with
    anyone who doesn't understand it helpful. Since I started
    trying to heal my body via diet, supplements and a couple of drugs
    I typically
    only discuss ailments with those who are trying to do the same.

    Talking to like minded people is informative and re-assuring.

    fwiw, in my experience, most people can't comprehend the multiple illnesses associated
    with me/cfs and attempts to explain thus only confuse them.

    tc .. x
    A.B., ahimsa, merylg and 2 others like this.
  3. minkeygirl

    minkeygirl Senior Member

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    I have 2 friends who knows I'm sick but we never really discuss it. I guess I like not having to talk about it but there is never a moment that I don't know I'm sick so it's always in the back of my mind.

    When I text to my BFF about problems I'm having (and his partner is a high functioning PWC) I end up being annoyed because all he says is to go rest. Now that is annoying.

    I think there is a difference when you have family local, I have no family and only the 2 friends local, who see you day in and day out vs those who you never see so don't really understand the extent of the disease.

    Mink
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Interesting thread and it will be interesting to see what others do.,

    Maybe it depends partly on how long you have been ill, partly how ill you are, partly the people you encounter (e.g. do they actually ask about the illness?), etc.

    After being ill for a few years, being ill just became my normal, so I don't really think about it much - I just try to get on with what I want and need to do. The illness kicks in and reminds me numerous times a day. If I feel it is an appropriate time to explain the situation to someone, I may try to do so. I try to read the situation, and find myself looking at the other person/people quite intently, trying to ascertain their reactions so as to know whether or not to continue, e.g. are they interested/sympathetic/bored/sceptical?

    I don't think it's a good idea to make a strict rule not to talk about it or think about it, as you may miss important opportunities to get info across, and not thinking about it may mean that you miss warning signs and overdo things seriously.
    peggy-sue and WillowJ like this.
  5. Tally

    Tally Senior Member

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    Talking about it to people who already know all the facts, and just getting it off my chest when I'm feeling down helps a lot.

    Trying to explain it all over again to people who have no clue is draining even when they are kind and receptive, and they usually aren't.
    Beyond, allyb, peggy-sue and 2 others like this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    I do this.

    I also like having this site as an outlet.
    allyb, ahimsa, Shell and 2 others like this.
  7. stridor

    stridor Senior Member

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    I am talking less-and-less about my illness. This is not a conscious effort on my part; it's just happening. I think that the constant self-talk and rehashing of illness or worst yet, explaining the science behind ideas are all a form of OCD. When you turn the corner and start to get well...we'll talk more about this in a sec....this goes away on its own. I think that it is common to all disorders which are not accepted by the medical community at large. We feel the need to justify how we feel and do so either with an apologetic tone or one of defiance.
    I have as much energy and exercise tolerance as 2 months ago....and I have approximately as much brain-fog. A bit less but it's still there. But I don't talk as much about mercury or methylation to others. Here, yes. There, no. People who have avoided me the past couple of years are coming up and asking how I am doing....and some people are asking in various ways for help. They see something in my face, I think, that tells them that I am returning.
    Beyond likes this.
  8. Allyson

    Allyson *****

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    I NEVER TALKED about it for years and it did not help in any way

    it just goes on alas ....

    Ally
    allyb and ahimsa like this.
  9. ukxmrv

    ukxmrv Senior Member

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    I don't suffer from anxiety so I may have different experience. The years when I haven't spoken about having this disease were the worst for me. Also the years when I didn't think about it or spend time researching it.

    In the early years there were doctors and mental health professionals who actively encouraged me not to talk or to think about it. They had beliefs that somehow it was magically go away. Looking back I can see how ridiculous that was and how badly it affected me in morale and trust in the medical profession.

    It's been 3 decades now so I have had the time to try different things.

    If you feel down after talking to family or friends it may be that they are not really supportive of you and need training / help in order to be so. My mother was pretty bad for a long time and we ended up going to see a family counsellor together and this was an enormous help and resulted in her learning new skills.

    It may help to keep a diary of these talks with family and friends and try and pinpoint if it is one person or one attitude that leaves you feeling down. Also it may help to examine what you think of as positive. It's such a loaded word. Are you hoping for people to "pep you up" or talking to vent and feel better somehow? I wouldn't use the word positive to say how I felt after talking to someone and I would wonder about the conversation if I felt that way. It may mean that you wanted to feel like you had vented or to feel supported so probably my mistaking your meaning there.

    Also talking takes energy. I get a PEM after a long conversation. Emotionally and physically it can be exhausting. If I found that I was constantly talking and using too much energy and getting PEM I would try and change that if possible.

    Hope this helps and we are all different. As I said I don't have anxiety so this may be totally the wrong idea for you. Really sympathise. Having this disease is bad enough.
  10. ahimsa

    ahimsa Senior Member

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    Willhm, there are so many different variables! I'm not sure it's as simple as whether talking is more helpful or not. Some questions to ask yourself:

    * Who is your audience? Understanding friends and family? Well meaning but clueless people trying to "fix" you with the latest fad? A supportive therapist or doctor? Random acquaintances (check-out people, etc.) who just asked "How are you?"

    * What is your goal? Need to vent? Need to find new treatment possibilities, or discuss the pros/cons of various treatments? Need to brainstorm lifestyle changes or other problem solving techniques?

    * What's the stage of your illness? Did you just get sick in the past year or so? (perhaps no diagnosis or treatment yet?) Or have you been sick for 10, 20, or even 30+ years?

    I'm sure there are more things that I've left out. These are just off the top of my head.

    "Talking about the illness" is such a vague and general idea. I would think that the who/what/where/why makes a big difference about whether talking helps (release tension, find out needed information, get support) or hurts (waste time trying to convince people who won't get it, worry too much, spend less time on enjoyable things in life).

    I hope that makes sense. It's hard for me to get across what I mean sometimes.

    Also, I've never had the kind of anxiety problems that you describe so please take this message with a huge grain of salt. Maybe when a person has a lot of anxiety then it feeds on itself and any type of talking makes it worse? That is not true in my case. For me it all depends on the situation as to whether talking about my illness makes me feel better or worse.

    I do agree with what others have said about not talking about the illness with people who don't understand. Nothing good can come of it from my point of view. Fortunately, there are thousands of other topics I can discuss with those friends and family members who don't get it. :rolleyes:

    And I also agree that even when talking helps you it makes sense to limit it so that you don't exhaust yourself. Mental energy is expended by talking even when you're getting a lot of support. It can creep up on you and then you find yourself suddenly exhausted. So be sure to do it in short bursts and take rests if you get too tired.

    I hope you find something that works for you. Sending you some :hug: HUGS! :hug:
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Brilliantly put! I suffered from lifelong anxiety (now significantly reduced through diet and supplements - and possibly age!), but the same things apply. Although I am shy with people I don't know, once I get to know them I can be quite extravert and very talkative - have trouble shutting myself up sometimes! But as you say, conversation can be exhausting, more so when it is tense, negative, frustrating and stressful, less so when it is interesting, relaxed and enjoyable.
    ahimsa and peggy-sue like this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Ah yes - I had forgotten that bit of the 'functional somatic', aka hysterical/hypochondriac, theory of ME.

    I wonder how many of us really do focus excessively on our illness, other than what is necessary to manage and try to alleviate it, or to help others understand what they can do to make our lives easier. From my own experience, and reading other people's posts, I think that most of us are just trying to get on with life as best we can, and achieve what we can, just as we did before getting ill.
    Valentijn and allyb like this.
  13. taniaaust1

    taniaaust1 Senior Member

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    I didnt talk about this illness for years and that time was the most stressful time for me with this illness. It made it so much harder to be emotionally dealing with. For myself, talking about it is usually stress relieving.

    I thou try not to talk about it thou with those who would make stupid comments and leave me feeling stressed due to lack of understanding.
    ahimsa and allyb like this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I rarely talk about it but this could be why my post count is so high here lol. Its just too hard to explain it to non cfsers so rarely do. I prefer this forum as im amongst others who get it. I will say that periods where I am functioning well, I spend alot less time online.
    Beyond, ahimsa, Creekee and 2 others like this.
  15. peggy-sue

    peggy-sue

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    Mostly, I try to get on with life. I don't talk about it much - I don't like to be seen as a moaner, but if it comes into a conversation where somebody needs educated, I'll give it a go.
    I'm not ashamed of having ME, I don't make it a dirty little secret. But then, I'm used to announcing that I don't drink because I'm an alcoholic. I'm not ashamed of that either. Or of having had anxiety, depression and OCD throughout my life. I do speak up about all of these things if I'm facing ignorance about them.

    I like coming here, I'm not up on most treatment protocols, but I like the supportive feeling here, we (mostly!) all know where we are coming from.

    But I also find that I get very down when it is all ME talk I'm experiencing. I need to take breaks and go elsewhere on the net, talk to other folk on different forums where I have shared interests that are not ME related.

    I sort of accept my limitations unconsciously now, they're just part of how I am. I prefer to think about what I can do.
    ahimsa, Valentijn and MeSci like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I feel very much the same way. I was initially very hesitant about saying I had ME, especially to doctors, mainly due to the fear of ridicule, as there is so much ignorance and judgmentalism that is associated with it. I also wasn't entirely sure that I met the criteria. Now I am (even if ME turns out to be a collection of illnesses). So I am open about it at appropriate times, ditto about things in my past, which also include an addiction.

    I think that such openness can change the images that people have of conditions, as the images portrayed in the media tend to be negative, exaggerated, simplistic and a word I can't think of that means 'cartoon-like'. Yes, folks - this person who is your friend, relative, former colleague, etc., has ME, has been an addict, etc - and look - only one head! S/he is not neurotic or delusional, and s/he won't steal your wallet - just a person living as normal a life as possible, as you are.

    That said, it still depends on whom I am talking to, as some people have such fixed ideas there is no likelihood of changing them.
    ahimsa and peggy-sue like this.
  17. stridor

    stridor Senior Member

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    (Sorry about that. I don't know if it is the site or this ipad (which I do not recommend) but I have a hard time posting. I just have to get used to not hitting the reply button.)

    I'm afraid that it gets worse than this Did you know that the DSM-5 has a new psychiatric diagnosis for people who spend a large amount of time on the internet researching their illnesses? It's quite cynical actually. The medical profession instead of adapting to patients arriving at appointments with current information about their diseases have invented a means to contain what must seem to them to be a very disturbing development.

    Unwilling to recognize or assist us in dealing with what besets us, now they can pathologize the behaviour and label us with a diagnosis if we attempt to help ourselves. And of course, you don't have to listen to the ideas of someone with a diagnosed mental illness.

    I am quite familiar with this process. According to my GP, my health complaints were part of an "atypical depression" and my ideas concerning my health are "delusional". The success that I had in treating Bipolar Disorder was attributed to "spontaneous remission". It had nothing to do with mercury or methylation treatments.

    So yeah, I have some insight into how this new diagnosis can be used. I haven't seen the criteria but would not be surprised to find that it included talking about our illnesses too much as well.

    It makes me upset just typing this out. My GP has refused to help me with my problems beyond blood pressure pills - and has been able to ignore everything I say or do as I have a history of psychiatric illness - and now he has a new diagnosis at his disposal to pathologize my behaviour should I have the audacity to look for answers on my own.

    Fortunately, I have a second Dr. This one thinks that Bipolar Disorder is just a symptom of bigger problems. He thinks that I am kind of smart and looks at the material I bring to appointments. He never heard about MTHFR before I predicted what my genetic tests would show. But he knew all about it for the next appointment.

    He reminds me of Dr House as he loves to solve problems based on people's symptoms. He is also always in trouble with the College of Physicians. He treated my thyroid problem even though my TSH was normal and he treated my adrenal problem even though lab results did not support it. He treats symptoms and not lab slips.

    He considers me to be a partner in my recovery. He loves "Dr Google" more than me and is always accessing the internet during appointments finding the latest ideas on subjects. At almost 70, if he can adapt then other Drs should be able to adapt as well. He doesn't hound me about compliance or get upset when I don't agree with a course of action.

    We need a revolution in health care... and it can start with how Drs are educated.
  18. madietodd

    madietodd Senior Member

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    I've never talked about my illness directly, in the sense of trying to get anyone to understand what my day is like, or any of the research. But I do refer to it, especially when declining, for example, a lunch outing. "I didn't really sleep last night, so I can't come out" gives people all the information they need.

    On the other hand, I keep a daily journal of what I eat and drink, how I've slept, and how the day went. I've done this for years. It's very useful when I get an idea for a new intervention, and I can easily see my baseline and track changes.

    If there's ever a day where somebody really wants to know what my life is like, I will answer whatever they ask. In 28 years, that person has not shown up.
    MeSci and Purple like this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Wow - whenever I heard about a doc like this my question is "Could you please clone him/her and send me a copy?!"

    Although I would prefer one who used medical sites rather than a generic search engine. My current GP is better than previous ones attitude-wise, but even he did the 'reassuring' 'all-normal' spiel about my test results before admitting, on being asked about a specific one, that he didn't actually know whether it was normal or not and proceeded to Google it! There are numerous medical sites, including a downloadable document from the lab that processes samples from that surgery, where you can get authoritative info about normal ranges and what different results and values mean. Doctors should be aware of these, and use them as a resource just as they use their textbooks such as formularies, etc.
    Beyond likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I keep a health diary too, partly as an aid to working out what helps and what harms. It helped me to eventually work out that my PEM normally kicked in 2 days after exertion, so that I could relate it to what I had done, which helps me to reduce the risk of over-exertion. One day, when I can afford to take the time, I plan to go through all the little details I have recorded to try to work out what is happening in my body at different stages of the exertion-PEM cycle. Ideally I would then like to get tests done at the different stages and correlate these with the symptoms. This is research, not obsession!
    peggy-sue and rosie26 like this.

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