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Writing as Therapy: My ME/CFS Story

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 14, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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  2. PNR2008

    PNR2008 Senior Member

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    In 25yrs of illness I have kept a journal. It consists of wide ruled notebooks about 28 of them. There were no rules just to write what was on my mind. Sometimes the words were big and angry, many times confused or needed processing but it was all me and was my saving grace. If I ran out of notebooks I felt like someone put duct tape on my mouth. I needed writing as much as thyroid medicine and expect to always require it.
     
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  3. Jody

    Jody Senior Member

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    PNR2008,

    I totally get it. I think the answer to the question "Why do writers write?" is "Because they have to." It's in us. And when you add a chronic illness which cuts us off from other people like this one does -- people really can't understand the enormity of it and don't want to hear about it -- We really have to write. And it does something for us that nothing else will.
     
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  4. Wayne

    Wayne Senior Member

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    Hi Jody, thanks for your encouraging article. I think it was James A. Michener who once said, "How am I supposed to know what I think unless I write about it?" Writing really does help me (us) sort out what we're thinking and feeling. I've also found that editing refines some of the subtleties of my thoughts, feelings and intentions. --- Thanks again! :thumbsup: --- Wayne
     
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  5. Jody

    Jody Senior Member

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    Hi Wayne

    That pretty much sums it up for me as well. :)
     
  6. peggy-sue

    peggy-sue

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    :)
    We really are all very different, aren't we?

    I find trying to write about my own (or read about somebody else's) illness experience really depressing (and, I'm afraid boring.)

    I don't want to think about the things I can't do, or what hurts.

    It hurts me to read about somebody else hurting, especially if I can't help relieve it in some way.

    I want to concentrate on what I can do, what lifts me up and gets me through.
     
    DadgummedShango likes this.
  7. Dreambirdie

    Dreambirdie work in progress

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    Thanks Jody, for telling your story about Kelly Upcott. It's amazing, isn't it, what power a good listener has to heal someone's heart and soul. I've had a couple of those in my life, and will be eternally grateful to them for just being there and holding that space of silence for me when I really needed it.

    I'm more of a painter and a song writer than I am a story teller and writer, and I use these to process the assorted agonies of living with this endless exhausting disease. It does feel good to have an audience for my creative works, and I'm finding that lately on FB, which has been a pleasure for me. There's something about having one's work be seen by others that makes it feel complete. I know you know what I mean. Hugs to you! And thanks again.
     
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  8. Jody

    Jody Senior Member

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    Peggy-sue,

    Lots of differences, and some similarities too.

    I felt that way myself for a long time. I think the timing of my naturopath asking me to email her was right, and knowing I was talking to someone who was interested and sympathetic made all the difference. It's entirely possible that if she had asked me at an earlier time it might not have gone anywhere. It happened at the right time for me.
     
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  9. Jody

    Jody Senior Member

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    Hugs to you too, DB:)

    One person, the right person with the right kind of attitude toward us, can make all the difference.

    Whether it's writing, painting or music, having it go somewhere, and get a response, is very healing. I have the same experience with facebook too. I started on there in 2009, around the same time I started writing for my website and for empowher, and started hanging around the forums here. Hearing from other people that they liked what I was doing, that they were interested, gave me a sense of community that I hadn't had in many years. And being able to carry on conversations, some major and some just everyday trivia filled an empty place like nothing else has.
     
    Dreambirdie likes this.
  10. daisybell

    daisybell Senior Member

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    Thank you for this Jody. You brought tears to my eyes as I read. I vacillate between really wanting to have my story heard and worrying that if I did, i would just sound boring or sorry for myself ( which I try hard not to be!)
    I have written some things in a journal but I kind of feel that I need the reflections and opinions of others to be part of the process of trying to live as well as possible with all the ups and downs....
     
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  11. Firestormm

    Firestormm Guest

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    Personally I find that I read personal stories related in articles on this forum more readily than I ever would if they were published in a book.

    I find them inspiring more than 'boring' or 'self-pitying'. They may be stories of desperation, of loss, of frantic searching for answers, for help, for anything; but they are very reflective of what many of us have been through or are going through and in that they serve a key purpose: they demonstrate that you are never alone.

    I don't think there has been a single account that hasn't at some point struck a chord with me. We might be different as individuals, our circumstances are not always the same: but we do have things in common that - perhaps unfortunately - have brought us together.

    So I wouldn't be put off from writing about the trial's and tribulations of everyday life with chronic ill-health. I do think it is healing for the individual - if anything it allows you to get things off your chest as it were in a constructive and structured way (if you are ever thinking of submitting an article).

    On a personal note, I was encouraged at various points over my 14 years since a formal diagnosis of ME was made, to write my thoughts down, to keep diaries, and to talk. At times I felt this was useful, at time I felt it was depressing, and at others I did think it was becoming a little obsessive and all-consuming.

    I was using my limited resources to write only about my woes: 'How do you feel today?' It came to dominate my life and trapped me somewhat. If it wasn't my family asking 'How do you feel?' it was my doctors or my diary :)

    I think there does come a point where you want to write about things outside of your disability and the woes of life, but that you need to have recovered at least to some extent, or perhaps to have comes to terms with your illness - to have accepted it - before you can.

    If anyone does want to see their story, or a part of it, published, then do contact me by way of the forums 'conversation' facility, and we can have a chat about any ideas you might have. I've been working with a number of new authors recently, and we should hopefully be seeing more of their stories published in coming weeks.
     
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  12. Sing

    Sing Senior Member

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    I don't have any one person to share with in an ongoing way. I might share one thing with this person and something else with that one, etc. I have a fair number of friends but no one I communicate with regularly even once a week. Maybe once a month is about as frequent as my interactions are with a person, barring group interactions such as church. Then, having a poor memory, I am not apt to remember what I said last to whom, or what they said to me either. None of this was the case before, in functional times, when I had a partner, a job and regular friends. I used to write every day too then, but now it is less often. While I used to remember what I had written, now I need to re-read it, and then re-read it again. So, what I am saying is that my basis for progress and ongoing relationship do not exist solidly anymore. Here is what "mild dementia" does to relationship and a lot of important things. However, I am reminded through this subject and conversation, of the importance of writing, then re-reading what I have written--trying to stay on it!

    Jody, I always have appreciated how you communicate and what you say--you bring a lot to people with your writing.
     
  13. Jody

    Jody Senior Member

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    daisybell,

    I totally understand. It really helps to know that someone is interested, that they know that our challenges are enormous. That they won't think we are boring and they know that we are not looking for pity, just some understanding.

    Perhaps one day you might write a blog for Phoenix Rising. The readers here will certainly understand, and will not think you are boring or self-pitying. Some will even respond.:) When I began doing that here 4 years ago, after Dr. Upcott encouraged me to start writing again, the responses from PR members really buoyed me.
     
  14. Jody

    Jody Senior Member

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    Sing,

    The lack of memory is an ongoing problem that causes all kinds of difficulties and road blocks. I deal with the same thing, sometimes it is worse, sometimes not so bad, but always there. In my job, the only reason I can do it is that everything is written down somewhere. Everything -- either as emails or articles. I have to refer back to this stuff repeatedly all day long.

    If you have any inclination to write, I encourage you to do so. The fact that it is in writing, and something you can refer back to rather than rely on a fragile memory, is a great benefit.

    People who have any understanding of what your condition has done to you will be able to look past the memory lapses, the repeating of stories, etc.

    Thank you for your kind words about what I write. These types of responses from fellow sufferers is a big help to me, too.:)
     
    Sing likes this.
  15. vixbright

    vixbright

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    Jody wow. A page from my own ME/CFS experience. Thank you! In 2002 I was a television producer from NY, living in Paris. Had the world by the tail, until that fateful day waking up sick. I couldn't even read for 3 years because I couldn't retain the meaning of the words - in english! Imagine living in a foreign country where I certainly wasn't fluent in french. And on my own in every sense of the word. While my symptoms have dramatically improved over these years, I am still living a nightmare. Breast cancer a couple of years ago was my tipping point -- after 8 years of crawling back from ME -- the surgeries, treatments and recoveries pushed me over the edge. Earlier this year I lost my apartment in Paris and was about to be homeless. A miracle has gotten me to Brighton UK where I'm still struggling, on the just about unable to buy food level. I am grateful for the local support I've gotten for housing supplements, etc. -- a first for me! -- but the gaps are still huge. I'm so very tired but still have a shred of hope. There are stories I hope to one day tell. Along the way I created a new, small, more manageable work for myself. Thanks to the influence of Paris I am now a sexuality coach. But I can only work a few hours a day. It's never enough it seems. Not when you have no back-up. So now, new country, new city, new culture -- again. For my illness, my physical symptoms were awful, but the loss of the cognitive, to me, was the most horrifying. Here's to us all - to our courage, bravery and fighting spirit.
     
  16. Jody

    Jody Senior Member

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    Vixbright,

    Oh my. What a harrowing journey you've been on. You should write a book. When you have the energy.

    I agree, the loss of the cognitive is the most horrifying. That we manage to survive and persevere, even if that perseverence must be focused on breathing in and out and not falling off the world, is evidence that at our core we are made of sterner stuff, even though our bodies are not. We are heroes, every one of us.
     
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  17. peggy-sue

    peggy-sue

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    I really need to apologise for having used the word boring.
    I do read folk's stories here, when they appear within threads, they often move me to tears and boring is not a word I could ever use to describe such harrowing stuff.

    I was referring to "personal stories" in general - in the terms of rubbishy sensationalist magazines, celebrity culture and reality tv...
     
  18. Jody

    Jody Senior Member

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    No worries, Peggy-sue

    I understood what you meant.:)
     
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  19. peggy-sue

    peggy-sue

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    Thank-you, Jody. :hug:
    I've been feeling very bad about having worded things so inappropriately.
     
  20. Jody

    Jody Senior Member

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    Peggy-sue

    Well then, I'm glad you spoke up about it so you could be reassured. You are officially off the hook. Heck, you were never on the hook.:)
     

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