Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Self-fulfilling Prophecy?

Discussion in 'Lifestyle Management' started by anncavan, Oct 24, 2010.

  1. anncavan

    anncavan Senior Member

    San Francisco, CA
    I have a blog where I recently posted some questions to the patient community. When are we educated advocates, and when have we gone too far surrounding ourselves with the illness (and possibly making ourselves more sick)? I'm looking for that balance right now, and would appreciate any insight!

    I started this blog for a lot of different reasons. As stated at the very beginning, I wanted to keep my family and friends informed of my situation. Ive been very lucky to have a lot of people reach out and show their concern over the past 3 years. I wanted to be sure they were able to know where I was, what I was up to, and how I was progressing. I also started this blog to give back, help the cause. There are so many other ME/CFS and Lyme patients out there who have helped me through their words whether it be through blogs, emails, forums, phone calls.

    So there I went, happily on my way. Since the beginning, Ive been fairly dialed in, and thought this a perfect platform to share my knowledge on the subject. At some point through my journey, I think dialed in become closer to sucked in.

    Some weeks I post to my blog 3-4 times. I sit down to my computer and start writing. Next thing I know hours have passed. And while good to have an outlet, Im a little worried Ive done myself a disservice being so involved.

    One day last week I finally realized that everywhere I turned I was reading, writing, talking about ME/CFS or Lyme. My facebook history page is easily 75% patients and/or organizations posting research. My twitter account is pretty much only medically related updates at this point. I realized I hadnt read a book for fun in 6 months.

    For a while now, Ive been able to accept this illness because I knew I wasnt living healthily before. I looked at it as this was my re-set button. I used to work countless hours, on the road, with little sleep. This was my forced time-out to reassess and learn good habits for when I recover. Somehow along the way Ive managed to become as type A about my illness as I was about my career.

    Enter the concept of self-fulfilling prophecy. I have begun to wonder am I making myself sick by surrounding myself with the illness?

    About a year or so ago now, I ordered the Gupta ME/CFS programme. Its a meditation, mind-retraining program designed for people specifically with ME/CFS. I jumped in with the same vigor I use in every aspect of my life. It was pretty easy to follow. It just required practice and structure. No problem. Im good at that. But a few days in a requirement was given, to stop reading and researching ME/CFS for the 6 month commitment you were to make to the program. NO WAY! And that was it. No more Gupta programme. But I have to admit Im starting to understand the rule now.

    Ive always thought I needed to be an educated patient to be my best advocate. And I still believe that. But I wonder where the line is At what point do I let go? By stopping my research do I risk not finding THE SOLUTION. Or does it mean Im giving into the illness? By accepting and learning to live within the parameters have I given up?

    I dont have the answers. I dont want to miss something that could help me. But I dont want to make myself more sick by surrounding myself with this information all the time. And then theres the acceptance piece. Im not ready to accept that this is my life yet.

    Fellow patients, advocates, friends, whats your take? Is there such thing as a self-fulfilling prophecy? Have you figured out the balance?
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    That is a hard question. You do really need to be educated on your conditions as you say. After developing POTS, I had to learn SO MUCH more! I spend hours reading every day. With POTS, you can't just get up and clean the house, go for a walk, etc. SO, I do have to sit a LOT. I am improving and it is wonderful. I couldn't have without the self teaching and of course my CFS doctor.

    If you are able to get out, just make sure you balance it all with taking a walk or whatever you can do. I used to garden with CFS, but not with POTS. Maybe make a rule, two hours only..Some way to limit it.

    I totally understand though. Thankfully there are great resources and we all benifit by talking to each other. If you want to do it less, maybe just a half hour less at a time.
  3. river


    I was diagnosed 5 years ago.
    Before that I'd write down all my symptoms just to see if anyone knew what was going on.
    This is the first CFS forum I partecipate in and I registered two weeks ago.
    Reading the forum I'm learning that most of the symptoms I wrote down before my diagnoses are the same a lot of people
    here experience and worry about.

    In other words: I have been sick full force with typical CFS symptoms (unable to leave the bedroom for 6 months) but I never surrounded
    myself with illness and in fact I have done very little research and I have never partecipated in CFS communities before.
  4. Snickers


    Virginia, USA
    I don't think at all that researching your illness is a self fulfilling prophecy. I know that for me and other people that I know it has been the research that has really saved us from getting worse etc. Many of us have seen improvements because of all of the research we have done. So in my opinion I don't believe at all that researching your illness makes you sicker. I think it is the most helpful thing I have done and I know others feel the same way.

    I think what is important though is balance. I think what you are starting to feel is maybe some burn out. I have seen so many people go through that and have felt it before myself. Sometimes people start to feel too consumed by their illness and feel like that is all they think about. When you get to that point sometimes it can be helpful to take a small break from researching. I think what is most important though is to just have a little balance in your life. Make sure that you are taking time to read a book for fun or do other things besides just research the illness or chatting about it with others online etc. It definitely can be easy to get caught up in the research etc....just keep an eye out and whenever you feel like you might be getting consumed by it be sure to take a step back from it all.

    In my opinion I think that research is important because no one has ALL the answers (not even the best doctors) so we need to do our own research as well to make sure we are covering all of our bases. So I don't think that you should stop researching at all. I just think that from now on you should make sure to balance your life a little more and make sure to take time out to do things that aren't related to your illness. Definitely read a book for fun or do other things you enjoy :)

    Take Care!!!
  5. Yes, balance is the key - I hereby give you permission to "take a vacation" from yourself and researching the disease. You're allowed to have other hobbies, watch tv, or read a book for fun.
  6. laura

    laura Senior Member

    Southern California
    I don't think spending a lot of time on CFS/ME is a "self-fulfilling prophecy," ie, it isn't making you sick. But I do think that it's possible for us PWC's to get over-involved in the research because so many things are unknown about CFS. So somewhere in us we think, if I can just research my symptoms/current treatments enough, somehow there will be a cure. We want to be healthy so badly. So we think, If I just get the right mix of supplements and medication and lifestyle, then I won't have PEM, brain fog, etc, etc. Maybe it's b12, or anti-virals, or supporting my adrenals, or (fill in the blank!) that will cure me...And everyone's been helped by different things, tantalizing us with possibilities. So we go overboard, researching and researching and then researching a little more...

    Meanwhile, we miss out on using what energy we do have to actually live our life.

    I agree with those who wrote before me: it's all about balance!
  7. Sasha

    Sasha Fine, thank you

    Hi ann - I agree with what the others are saying about thinking about the illness not making/keeping you ill and about needing balance, but I understand why you have got "sucked in". When you're very ill and not recovering, you are faced with an unsolved problem; and if you are a proactive sort of person, you will keep seeking a solution until you find one (what you've been doing) or until you realise that there is no good solution available yet (maybe this is the point you've reached and why you're questioning your continued exclusive focus on your illness).

    I'm sure you're aware of the stuff on pacing and staying within your "energy envelope" (Bruce Campbell has done some very good stuff on this - website, book etc.) that many people with ME/CFS have benefited from. I think that, in the absence of generally effective treatments, or in the absence of having found anything that works for you, this is the basic thing to return to while following a long-term strategy of keeping an eye out for new treatments that seem to have a sound basis. I think that's maybe the next stage after such active, full-time immersion in thinking about ME/CFS - follow a basic pacing regime to keep yourself well within your limits and give your body the best chance of improvement under its own steam, and maybe set a daily time limit for looking for new stuff. And spend the rest of your time enjoying yourself. You could think of enjoying yourself as treatment!

    I wish I practiced what I preach - I spend far too much time on this board and chasing the latest XMRV news but I keep trying to go back to really rigorous pacing. I think we all struggle with balance one way or another!
  8. justy

    justy Donate Advocate Demonstrate

    Hi Ann, i fully understand your point and if i am totally honest this is exactly the thoughts i have been having recently. I have noticerd that in my "former" life i was a very driven and obsessive person and i still am now, only this time it is all about the illness. I think i would also rebel if asked to stop researching, going on these sorts of forums etc.
    On the other hand, i am thinking more and more about having a total break and only reading stuff from people who have recovered and using forums for people who are recovering. In other words only focus on the positive.

    I notice that i have become so embroiled in the research that i am very cynical about people who claim to make a full recovery. However, there could be a good reason for this, which is that i considered myself fully recovered for 10 years and am now sicker thatn ever. I didnt realise that you could have a remmission from this illness. i just thought i was cured. Also i now realise that during those 10 years i wasnt fully recovered. I had a good life and did most things, but real fitness and happiness with where i was always seemed just around the corner, and i could never quite reach it. I couldnt work full time and deal with a family, even working or studying part time was almost too hard.

    I guess what i am saying is that i feel the same way as you, but do not have any answers. Part of me wants to ignore the M.E community and try the whole positive getting well thing and part of me wants to stay true to the medical research and to find a medical model for recovery and help others who are less fortunate than me.
    I suppose what i have just proven is that i am still very much an either or/ black and white type of person and perhaps balance is the key for us all.
  9. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    If researching the condition leads you to anxiety or depression (due to running in to the fact that there is no proven treatment - or reading the offensive works of certain psychiatrists), then by all means have a break. If you don't enjoy it, you shouldn't do it. Likewise, 'obsessive focus' in general is not healthy.

    But if you don't have this response, I don't see the harm.

    I think the Gupta amygdala 'retraining' program is pseudoscientific in terms of its claims of substantially minimizing the symptoms of CFS. But that doesn't mean it can't have substantial benefits with regards to coping with this disease and maintaining an positive outlook.
  10. *GG*

    *GG* senior member

    Concord, NH
    I agree! GG

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