Express Yourself: Creative Writing as Therapy for Chronic Fatigue Syndrome and Fibromyalgia Patients
By Eunice Beck, R.N. •
November 6, 2002
The other day, I was wandering through the message boards and chat rooms at Immunesupport.com. I do this intermittently, and my editor called my attention to a message board I had not previously visited. This particular message board is for writers, a place to express oneself, in whatever manner one chooses. There are posts with some terrific poetry, some very interesting and inspiring stories. The writing is not restricted to dealing with CFS/FM, although much of it has that focus. I asked one of the writers if she would mind my sharing one of her posts with you.
My Inner World
My inner world One to the inside.
Is composed of many rooms
Each with a heavy,
That can be opened
In the first room
Someone leans over a table
In intimate detail
From the second come
The sounds of pacing
Clomp, clomp, clomp
And a voice ranting.
Of just how bad I really am.
A third door opens to a room
Lined with books
Inside a person sits
Studying, reading, reasoning.
Another door opens to someone
In this inner space.
And deletes or erases
The fifth room is different.
It has two doors.
One to the outside
One to the inside.
The person in this room
Can concentrate and deal with
The inside and the outside.
There is someone
With ultimate control.
Someone who controls
Each of the doors,
Controls the inner world of
He decides whether
To open a door,
Shut a door,
Lock a door tight.
The controller seems to be gone,
The doors to death and negativity
Are flung wide open.
The other doors?
Open only a crack or
Not at all.
Will the controller return?
It is obvious to the reader that many of those posting have formed supportive and comforting friendships with others posting on the board. In fact, they have one little “game” that they play every so often that I found amusing and fun. One of the writers will start a story with a paragraph setting up a character or scene. Then other writers will pick up on this to write a sentence or paragraph adding to the story. It was interesting following the stories as they develop.
The writers’ board is only one of several that are listed on the ImmuneSupport site. There are separate ones for FM/CFIDS, depression, general chit-chat, and a number of other subjects. There are also a number of chat rooms which are open all the time. I’m not a great one for chat rooms although I have done “guest chats” in a couple of them. But they can be a great help at that time when you just HAVE to talk to someone. They can also provide a sense of continuing support as well, as the folks you will meet are frequently there often, so you will get to know each other.
ImmuneSupport provides a number of services for us. In addition to this newsletter, there is now a “Tip of the Day” which has some really good information in concise form. There are the chat rooms and message boards, a large library of information about CFIDS/FM, a doctor referral section. And, large amounts of money are donated to research from the products ImmuneSupport (Pro Health Inc.) make available for us.
In case you didn’t see it in the recent email bulletin, Pro Health is also announcing new CFS & FM Webmaster Tools & Link Exchange Programs at ImmuneSupport.com! This has been designed to enable CFS & FM sites all over the world to get connected so we can work together to share important information and resources with our readers. Webmasters can post headlines for the latest CFS & FM treatments and breaking news on your websites (linking to the complete content), in addition to linking to CFS & FM events, chat forums and message boards. We also invite CFS and FM related websites to link with us. To learn more about these programs, click on the link below:
How many of these resources you use is up to you. I am just grateful that they are available. Do I sound like I am proud to be a member of the ImmuneSupport family? That’s probably because I am. I hope that those of you who are not using all this available information will take the time to check it out.
The URL for the writers' board is:
The URL for access to all the chat rooms and messages boards is: http://www.prohealthnetwork.com/chat/
Hope to see some of you there. Take care and be well.
Yours in health,
I welcome your comments and questions at: firstname.lastname@example.org. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.
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Turning our suffering into Art
|Posted by: TamaraSinging
May 24, 2008
I was SO happy to find this posting! I have been wanting to talk with other PWC's who have found creative ways to express themselves and this illness experience.
I have had CFIDS for 18 years~and have gotten significantly better over time. Two years ago I put out my first CD, Long Time, No See and there are two songs on it that were inspired by my CFIDS experience. The first is called Listen Me Back and is about the loss/change in our identity when we are so sick for so long and how we need people to remember who we used to be. The other, Are You Really There?, is about the questioning of faith that I believe is inevitable when suffering is prolonged. I apologize that neither of these songs is up on my myspace page or website and that is because I am now about to release my second CD, Living Down River. But you can purchase this first CD at my website: www.tamaralewismusic.com or at CD Baby if you are used to that system--oh, you can hear samples for free at CDBaby!
The title track of the new CD, Living Down River, was inspired by a friend of mine who is in my CFIDS support group. She said, "No matter how much better I get, I will always be living down river from this illness experience." I knew immediately that I had the title for my next CD--and that I needed to write a song exploring that idea. A few lines from the chorus:
Living down river, living down river
where silt and debris land on the shore
living down river from now til forever
living what all came before.
In the end, though, this is a hopeful song as it ends with the notion that we survive these experiences through love. There is a 30 second sample (myspace couldn’t upload the whole song) on my myspace page if you are interested: www.myspace.com/wwwmyspacetamaralewiscom
I wish you all well and hold all of you in my heart even though I don’t know you personally.
But we all kind of know each other through the common thread of the CFIDS experience..