Writing as Therapy: My ME/CFS Story

November 14, 2013

Jody Smith reflects on how vital she has found the slow return of her writing ability – how it has helped with the expression of feelings and experiences, contributed to reestablishing a sense of self, and has proved such an important and productive means of social interaction…

pixabay-soliloquy

Soliloquy – A dramatic or literary form of discourse in which a character talks to himself or herself or reveals his or her thoughts without addressing a listener.

In my life before ME/CFS, I did a lot of writing. I kept a journal most of my life, and in the years before becoming ill, I was also writing for newsletters for my church and my homeschooling group. My husband Alan and I had a website with 40 writers that we managed, and I wrote for that too.

None of these made any money but it was all very satisfying. I had just moved into doing some proofreading and editing and made a little money at that until I got too sick.

For several years after that, I did no writing of any kind. I couldn’t hold a pen because of the pain in my hands, and had given up on the computer keyboard because I had no clear thoughts and nothing to say. And by then, there was nobody to say anything to if I wanted to.

I mourned the loss of this integral part of my identity, with no hope that it would ever reappear. Until my naturopath Dr. Kelly Upcott asked me to email her every week and write anything I wanted.

My initial emails were about three sentences long. I would slowly and painstakingly list whatever the main symptoms of the week, and send it off, then head off to bed exhausted. I remember one email where I led with a sentence saying that I felt like low-grade crap. She was the only person I emailed, and my little missives left me depleted and scrambled.

A couple of months into her ME/CFS treatment, I noticed a change in the nature of my emails to her. I was now writing a few paragraphs, that focused less on symptoms and more on how I felt and what I’d been thinking. I told her horror stories of my challenges and past history. As time went on, my emails became much longer, and I used her as a sounding board, mother confessor and confidant.

My soliloquies were no longer delivered into a vacuum. Like the actor standing alone on the stage, I knew that there was an audience of one out in the darkness. It made all the difference for me.

Her replies were always short, sympathetic and reassuring. I would have liked them to be longer of course but looking back I think the important thing was that she always responded and I knew that I could count on her for that. I knew I could count on her to care, and to respond with kindness. What mattered to her in all this was… me. Just me.

In a period when responses and interest were few and far between, she filled the gap for me and helped me to pull together some of the rags and tattered threads of myself.

I felt like I had a voice again. I felt heard. I began to believe again that how I felt mattered. That I mattered.

She rarely gave advice. We were not trying to tackle issues or make changes. She was merely creating a space where I felt like a whole human being and helped me to come to believe that I could be so again in my real life, and not just in emails to my naturopath.

I think that if Dr. Upcott had not done this, my recovery in many respects would have taken much longer, and in some respects might never have taken place at all.

I began to write in a journal again during this time, and filled page upon page with my words, with my experiences and my feelings. In some ways my thoughts gradually became less muzzy and fractured, and I began to know what I felt and thought once more. I began to know where I was at and who I was again.

After a few years of this practice, I found myself with a computer that Alan had bought for me. We both knew that the chance of me being able to work in the real world was nil, but we both thought that perhaps I might be able to find some kind of work online. I had experience with this from our old website and had loved it.

We both also were very aware that this was no sure thing, finding work online was not guaranteed. But it was the only shot I had so back online I went.

The laptop sat unopened for the first few days. I was afraid that we were going to find that this had been a monumental waste of money. Alan very kindly did not ask me about my plans. He did not try to get me to do anything with this threatening machine.

After a couple of days I would open my laptop once a day to check for email — there were never any — and to check our bank account online — nothing much there either. Then I would turn off the laptop and carefully close its lid and creep away from it till the next day.

Then I started looking through job lists online and was fortunate to get a bite after only three submissions to various sites. EmpowHER was going to let me submit articles about myself and about ME/CFS. They weren’t going to pay me, but being able to speak about my experience and have it possibly read by others was heady-stuff indeed.

This was a chance to dust off my rusty skills, and re-learn how to type (I reversed letters and broke off words in the middle, lived on the backspace key). And the kind responses from my editor filled an old and dire need for personal contact.

This gave me the push I needed to start my own website Ncubator.ca about ME/CFS. Articles poured out of my fingertips as I told my story, to myself and to anyone out there who might read it. Some days I wrote three or four articles, but every day I found myself writing something.

After six months of free articles for EmpowHER, they started paying me to write for them. After another year they asked me to do some photo work. The next year I became an editor. And a year later, I was doing some writing for Phoenix Rising.

The odds against any of this happening were steep. I know I was very lucky to end up as I have. And what the future holds is anyone’s guess. But I feel more “normal” and like I have a decent chance of being able to build a life again.

And one thing I am very sure of is that it’s very likely none of it would have ever come to pass if the compassionate and astute Dr. Upcott had not looked into my soul and recognized my need to communicate and express myself to others and asked me to write for her.

Do you feel that if you can’t get your words out you will burst? Do you feel like a ghost or like you have no reflection? Do you feel like you are choking on all that does not get said?

Journaling, emailing, writing for friends may be one of the things that can help to bring your life back into focus for you. It may well have saved my life.

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23 comments

{ 23 comments… read them below or add one }

PNR2008 November 14, 2013 at 6:16 am

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.

Jody November 14, 2013 at 8:09 am

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.

Wayne November 14, 2013 at 9:20 am

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

Jody November 14, 2013 at 10:56 am
Wayne

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

Hi Wayne

That pretty much sums it up for me as well. :)

peggy-sue November 14, 2013 at 11:11 am

:)
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.

Dreambirdie November 14, 2013 at 1:01 pm

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.

Jody November 14, 2013 at 6:22 pm
peggy-sue

:)
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.

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.

Jody November 14, 2013 at 6:26 pm
Dreambirdie

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.

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.

daisybell November 14, 2013 at 10:32 pm

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….

Firestormm November 15, 2013 at 12:04 am

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.

Sing November 15, 2013 at 10:10 am

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.

Jody November 16, 2013 at 7:20 pm
daisybell

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….

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.

Jody November 16, 2013 at 7:25 pm
Sing

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.

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.:)

vixbright November 29, 2013 at 1:35 am

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.

Jody November 29, 2013 at 6:04 pm
vixbright

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.

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.

peggy-sue November 30, 2013 at 6:34 am

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…

Jody November 30, 2013 at 8:41 am
peggy-sue

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…

No worries, Peggy-sue

I understood what you meant.:)

peggy-sue November 30, 2013 at 10:07 am

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

Jody November 30, 2013 at 10:10 am

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.:)

RosieBee December 2, 2013 at 4:03 pm

Thank you Jodie for writing about your experiences. So much resonates with me. I lurk and read a lot here, frustrated at being unable to put down my thoughts and feelings and join in the conversations. I am grieving the loss of my faculties, as a biological researcher my work was my mind, but it is all trapped inside unable to be expressed coherently.

I compensate a lot, but I had to face how bad things have become when I tried for three days to write short directions to my home. In the end I had to cut and paste directions to the sports club near me instead, the words just would not come. Sending emails and texts, I have to save them, edit and re-edit until I can get them to make sense.

However, some time ago I decided to try putting on paper the thoughts that come to me when I can do it – memories, ideas, stories etc. I just 'download' and don't worry about anyone reading them. So I get pages of these 'stream of consciousness' thoughts, but struggle to find a few pertinent sentences when it is required of me. I presume accessing different parts of the brain for the different tasks.

It saps my confidence hugely to be unable to express my self adequately in words, spoken or written. Often what comes out is off the mark and leaves me looking foolish and possibly a bit weird! It is not something I see talked about much with ME, probably because it is so hard to verbalise if it is a problem. I am finding the cognitive problems as much if not more debilitating than the physical ones. Thank you for your fascinating insight into your progress with writing and how important it has been to you.

Jody December 2, 2013 at 8:38 pm
RosieBee

Thank you Jodie for writing about your experiences. So much resonates with me. I lurk and read a lot here, frustrated at being unable to put down my thoughts and feelings and join in the conversations. I am grieving the loss of my faculties, as a biological researcher my work was my mind, but it is all trapped inside unable to be expressed coherently.

I compensate a lot, but I had to face how bad things have become when I tried for three days to write short directions to my home. In the end I had to cut and paste directions to the sports club near me instead, the words just would not come. Sending emails and texts, I have to save them, edit and re-edit until I can get them to make sense.

However, some time ago I decided to try putting on paper the thoughts that come to me when I can do it – memories, ideas, stories etc. I just 'download' and don't worry about anyone reading them. So I get pages of these 'stream of consciousness' thoughts, but struggle to find a few pertinent sentences when it is required of me. I presume accessing different parts of the brain for the different tasks.

It saps my confidence hugely to be unable to express my self adequately in words, spoken or written. Often what comes out is off the mark and leaves me looking foolish and possibly a bit weird! It is not something I see talked about much with ME, probably because it is so hard to verbalise if it is a problem. I am finding the cognitive problems as much if not more debilitating than the physical ones. Thank you for your fascinating insight into your progress with writing and how important it has been to you.

RosieBee,

I am so sorry to hear of all the loss you have suffered. I can only hope that it helps to hear from someone who also used to be unable to comprehend or express a whole sentence at one time and who has recovered to the point of being able to write, converse and … think. It had seemed to me at one time that I would always be trapped in my mind without being able to use it. I had despaired and given up hope of ever being even a shadow of my former self.

The symptoms that had me bound and gagged were enormous, for a long time. No improvement of any kind for a long time, and the only changes were more loss. But even from this depth of deconstruction, return, whether a little or a lot, is possible. I am hoping that this will happen for you. Don't give up hope.

Your post was very coherent. You expressed yourself beautifully.

RosieBee December 3, 2013 at 6:50 pm
Jody

RosieBee,

I am so sorry to hear of all the loss you have suffered. I can only hope that it helps to hear from someone who also used to be unable to comprehend or express a whole sentence at one time and who has recovered to the point of being able to write, converse and … think. It had seemed to me at one time that I would always be trapped in my mind without being able to use it. I had despaired and given up hope of ever being even a shadow of my former self.

The symptoms that had me bound and gagged were enormous, for a long time. No improvement of any kind for a long time, and the only changes were more loss. But even from this depth of deconstruction, return, whether a little or a lot, is possible. I am hoping that this will happen for you. Don't give up hope.

Your post was very coherent. You expressed yourself beautifully.

Ooops sorry Jody, I spelt your name wrong! Thanks for the compliments and the encouragement. It's vital that we share when things improve, so I very much appreciate hearing your story. Bound and gagged, really does describe how it feels. I made a good recovery after the 1st ten years and the knowledge I did so well after being so ill keeps me going through this latest setback. More power to your pen!

Jody December 3, 2013 at 6:53 pm

Think nothing of it RosieBee. People spell my name wrong all the time.:) I'm glad to hear you've had some decent recovery yourself. And thanks for your encouragement.:)

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