Writing the true story of ME/CFS, not creating sensational headlines

Why do I write?

Because I need to.

What is a writer?

• a person engaged in writing books, articles, stories, etc.,especially as an occupation or profession; an author or journalists
• a clerk, scribe, or the like.
• a person who commits his or her thoughts, ideas, etc.,to writing: an expert letter writer.

Taking the above description into account, then yes I am a writer. But aren't we all in some way.

Yesterday I was delighted to read that one of the national newspapers had put in a request to the Irish ME/CFS organization, for an article written in a first-person's account of living with the illness. As I have recently started to contact various media outlets to write a regular feature on life with chronic illness, I put my name forward for consideration. However, as I was featured in that paper a few years ago this opportunity was ruled out. Fair enough.

At first I did not remember being in that paper, but last night I did...  It was not an article that I had written myself, but as a result of an interview.

Sometimes a journalist really understand your story. And they are great at telling the truth. They re-tell the story, our story, as it is. Other times the story is dramatized -sensationalized. 

I remembered. 
I remember that interview. I remember sitting, and at times lying, on the couch looking at the fire as we spoke. I remember getting up, walking around a bit, cordless phone in my hand. It was a long but frank and open interview. I felt that the journalist understood the illness and the challenges.
I told her about my story to date. That I had periods of being housebound. That, living with an illness so poorly understood can bring its challenges in terms of getting proper support from the medical profession. I also talked about my creative life. How that helped me to deal with the challenges.

I remember discussing how some media has a tendency to sensationalize, or dramatize the illness. For whatever reason. I felt that she understood my concerns. And yet, yet, she proceeded to portray my story with the tag line under my photo: "Freedom: Corina Duyn is now able to leave her house after being confined to her bedroom for 10 years." Which was far from the truth.
The article starts with for Corina Duyn the loneliness is the worst aspect of the illness. Again this was not the case. I had and have a wonderful set of friends who made sure I was never lonely. I was well supported, and I am quite happy with my solitude. I value it. There is a difference between loneliness and solitude.

The main reason I ask journalists not to dramatize the illness as that I feel it frightens people who are recently diagnosed with this illness. It is frightening to read that there is no life with ME. That all live is lost. Absolutely no way of recovery. Life is hell. You might as well throw in the towel of ever having a life again.

Reading the article my thoughts were going to somebody recently diagnosed and reading in the national newspaper that somebody with the same illness had been 10 years alone in a bedroom. How is that person going to go on with her or his day? Having the prospect that that might be happening to them. I feel responsible. I feel responsible for telling the truth. MY truth.  Not frighten people.

I remember when I was ill for the only a few months and I read an article in the paper that somebody was ill for five years and there was "no life with ME."

No life!

What kind of message does that bring?
It scared me. I couldn't 'go' there.

It brings a message of fear. Fear of the unknown.

Fear of never ever seeing the light again. 

I don't see it that way. Yes life with ME can be absolutely s**t. Can be an absolute challenge. But as we wake up in the morning, and take our first conscious breath, we might as well make the most of our day.  That has been my motto for 18 years.
Some days that might just be getting from bed to couch. And back again. Or having to stay in bed and deal with the pain. Just be. Exist. Other days one is able to stick ones foot in the door and experience the light of life again. Some days are filled with some glorious moments of gratitude.

I write, because I have to. I write to make sense of my life. I write to make sense of pain, of exhaustion, but also to see that beauty is still around me, and in me.

I write to tell the story of ME as I see it. Warts and all, but also the beauty and wisdom of nature. The lessons we can learn. I write to support others with ME. I write to maybe make that one person who reads my words be less fearful of their reality. To let them know they are not alone. To make them take a deep breath and feel the life within themselves. As long as we breath, we are alive.

It hurts me deeply when our story of this relentlessly challenging illness is used to sell newspapers.

To make it a tabloid story. That time in 2009, I was appalled to read my story in such a twisted form. I wrote to the newspaper, to tell them of the hurt they caused me.

Many friends wrote to the paper as well, to tell of the anger of how my story was portrayed. A misleading story. The story reflected bad on them too. Friends were my lifeline. Here it was suggested I was left alone ...
I know a lot of people do loose friendships during this illness. That is a hugely challenging fact. My heart goes out to them.

The journalist stuck to her version.

That is why I am glad that the newspaper asked for a story written by a person with ME. A story written as it is (unless it will be edited). A true account. Not written from the perspective of an eager journalist. 
I have had other journalist making up some words I would never have said. They take creative licence. Other times the story portrayed is basking in truth. Thank goodness!

Over the past month I have written a daily blog. It gives me a space to write about life as it is. For me. And respond to what others are asking or telling me.  My biggest dream is to write for printed  media. A few opportunities have come my way to share my views of life with illness. A life I feel I have turned from illness into wellness. This does not mean that I have recovered. I still very much live with this debilitating illness, am very restricted in my movements, in my available energy, but I am alive. I live a good life.  A creative life. A life filled with gratitude. Writing came into my life because of illness.

I don't write or create art as a business, I write and create to understand my own story. To share my story, to be of support to others. Ill or not ill!

It is hearth warming when I seemingly have reached someone with the words that I utter, or the sculptures I create. That my explorations make sense for whatever their life story is. To read in their messages, or email, or letters that one word, that one sentence that made them sit up and think. To make them be creative again. To see that there is a way to live with this illness. Until a cure might come our way.

I read too. Lots! And I too have those moments where you think, 'ah, that is exactly as I see it, I just didn't know the words for it.' I thank other writers for writing my thoughts.

That is why I write.

And that's why I think it is important that the story of illness should be written by a person with illness, or alternatively by a very understanding, and sensitive journalist.

Links and further reading

• writing story from 2011: write-time
• my books