Writing about Fibromyalgia: The psychological and physiological effects

“There is no greater agony than bearing an untold story inside you”, Maya Angelou

A very interesting interview awhile ago on CBC Radio with Michael Enright as host. Dr. Suzanne Koven, who is a Massachusetts  General Hospital Writer-in Residence and a primary care doctor,  writes, teaches and speaks about the healing power of story writing. She was Enright’s guest. It has allowed me to ponder upon my own need to write about fibromyalgia and in turn for others to comment on my blogs. It becomes a shared community of those of us with chronic pain; it also allows me to reflect upon how I came to this point in life when I have finally completely accepted that I have a life long challenge ahead of me.

I frequently review sites about fibromyalgia and while many come and go I wonder at my own need to continue, year after year, to write about the many issues that plague many of us living with this invisible dis-ease. I often become discouraged because most of the searches and comments on an old blog about itching seem to pervade the site, which was and continues to be the most popular topic, much to my surprise. Of all the symptoms that challenge us, maybe it is itching that has the most physiological and psychological angst associated with it. But, are we all alike in this daily struggle? Or, is there one symptom that hounds us more than others? For me it is undoubtedly pain. Next, it is the lack of stamina that distresses me since I was once a high energy person. The past is always there waiting for us, reminiscing about what used to be and lamenting about physiological losses. I have a need to uncover how it all came to be that past events trigger into the present. Life can send us reeling, presenting blows we never recover from, presenting memories that are dependent upon where we are in our lives. Still, I do recognize that life memories are often unreliable. While yet, it is in the storytelling and narrating of my life that I can now see a pattern, a series of events that overwhelmed my ability to deal with sensitive receptors. I reclaim some of this loss through therapeutic writing. As a mindful writer I am working to get out of my head and into my body. I know enough ( or not enough!) about neuroplasticity to realize that who I am is malleable and can be changed. The past and the future are not the present; they are created in the brain. While the past impacts my present, I must “re-engage the healthy self” (Koven interview). This happens for me when I begin ‘narrative therapy’ . I don’t want to get stuck there and dwell over and over, but allow my brain to rewire itself so that I no longer see the world in black and white.

I enjoy long comments from readers as it reiterates my view that there is a healing power in storytelling. But, in the end there is nothing but the present moment which, for me, where I live is spring time. The past is behind me and while it shaped me I have to learn how not to let it effect my catastrophic view of the future. Let me enjoy the beauty of the season.

image1 (8)

11 comments

  1. Bonnie says:

    The lack of stamina is my biggest hurdle in life, I am always readjusting my day by how much I feel I can do and what I actually can do. some days are better then others and I’ve learned not to beat myself up. I am reading the book The Power of Now by Tolle, It has helped a lot with daily living in the moment. That is all any of us really has. Thanks for your insights! Keep up with the blogs they help!

  2. Barbara Keddy
    Barbara Keddy says:

    There is a great article in the mag MINDFUL this month on being hard on oneself! I too suffer from fatigue which is another word for stamina , I guess. Some days are worse than others. Changing temperatures is a tough one for me. Thanks for your comments, Bonnie!
    Best wishes,
    Barbara

  3. Ellen says:

    Thank you for your post, Barbara and sharing how writing helps you. I agree entirely that we must do our best to be fully present, rather than dwelling in the past or worrying about the future (difficult though eh?)

    Yours and Bonnie’s comments made me think of a project by a nurse (Bronnie Ware) who worked with the terminally-ill, and recorded the ‘Top’ 5 Regrets of The Dying. The general sentiment seems to be being true to oneself and not working/worrying so much!

    1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
    2. I wish I hadn’t worked so hard.
    3. I wish I’d had the courage to express my feelings.
    4. I wish I had stayed in touch with my friends.
    5. I wish that I had let myself be happier.

    I find these a deeply important reminder.
    Ellen

  4. Barbara Keddy
    Barbara Keddy says:

    Thanks, Ellen:
    Letting myself be happier is a difficult one for me. If I am not anxious about one thing for awhile I quickly scan my world and find something else to be anxious about! There is never a dull moment in my brain, haha! it quickly looks around for something to be anxious about even if I am happy at the moment. But then, happiness is fleeting anyway isn’t it? Trying to live in the moment is the hardest things we can do!
    Thanks for your comments, I appreciate you checking in once in awhile with good pieces of advice!
    Barbara

  5. Ellen says:

    Thanks Barbara. ‘Never a dull moment in my brain’ – that resonates with me for sure!
    Ellen

  6. Carolyn Thomas says:

    Hello Barbara

    I had missed this post back in May (was up to my eyeballs in book stuff then) so I’m so glad you reminded me of how you too had been impacted by Dr. Koven’s CBC interview.

    The illness narrative, as she told Michael, isn’t just about illness, “but can also be about big themes like identity and life and death and love and resilience.” I too have wondered why I’m still writing and speaking about women’s heart disease eight years after I started.

    I don’t have fibromyalgia, but have been quoting your blog posts on my own blog for years. I don’t ever write about breast cancer, yet I have a surprising number of breast cancer survivors who read and comment on my blog posts. The common attraction is what Dr. Koven describes as the illness narrative.

    Lovely post – now go out and enjoy the beauty of the season today… 🙂

  7. Barbara Keddy
    Barbara Keddy says:

    Thanks Carolyn: I wish I had your stamina for sitting at the computer so diligently and writing as extensively as you do every week. Your website is lovely and you have helped so many women understand the issues involved with women and heart disease. I have you to thank for the support you provided after my own heart attack almost 4 years ago! You kept me from becoming despondent.
    I did go out and enjoyed the day today although I can’t walk very far. I have great expectations of myself, but after almost 5 months since the hip operation I am not meeting those expectations. We expect so much of ourselves… no matter if it is heart disease, cancer or chronic pain or any combination of those ailments/diseases. I have to learn to let it go and see what evolves with my walking a year from now. After 5 months and the heart attack I expected so much. It all takes time to recover. I have to remember that! Patience is not my strong point.
    I am eagerly looking forward to your book which will be magnificent. Hopefully we shall meet face to face one day.
    Barbara

Leave a Reply