Friday, April 29, 2016

We need to tell our story...

Page from 'Into the Light © Corina Duyn 2015

ME Awareness month (including 12th May International ME/CFS Day) is almost upon us, and I am heading into this month with a sick feeling in my stomach. 

I usually feel proud of what I have achieved in the past 18 years; how I manage to live my life despite living with this illness. How my focus is on the positive and what I have learned from this experience of life on the other side.  The side nobody wants to find oneself living in...

But in the past few weeks a sick feeling in my stomach is increasingly getting worse. Today I actually felt nauseous reading what one woman (and most likely a strong group of people/lobbying group behind her) can do to a large group of people in Ireland, UK, Holland and beyond, no doubt...

This Irish born neurologist wrote a book about psychosomatic illnesses. I must admit I have not read the book, but have been subjected to her thoughts on ME as an illness in ones head, during a radio interview last year with Sean O'Rourke Dr. O'Sullivan, the writer of the book "It's all in your head: True stories of Imaginary illness had been on the radio the day before, so of course we (Sarah and myself) we asked about this, and I think we both gave our views on the reality of this illness in a clear and calm manner. 
I thought that was the end of that.

It wasn't.

This doctor had her book shortlisted for the Wellcome Book Prize 2016 and she was on a Media tour. An interview with Ray D'Arcy made me sad and angry. 
I wrote to the show in response to the fact that the reporter and interviewee were giggling when they broached the subject of ME, with D'Arcy mentioned as being "Common in the nineties" 
"... Your interview with Dr. O'Sullivan has caused great upset in people living with M.E. especially the fact that you were giggling. This condition is very real for many people. To belittle it by giggling is hurtful, to say the least...."
I know many of the people living with ME wrote to the show as well, but there was no reply to any of us, and no apologies were given the day after the broadcast, or since. 
I wrote to the Broadcasting Complaints department, and so did others. We are awaiting the outcome of the investigation.
We also wrote to the Wellcome Trust about the book's negative and unfounded, outdated information regarding ME, but nobody responded. 
To our horror, this book was awarded the overall prize of £30.000 and all the recognition coming with it.

Within a day one of the members on the Dutch health committee charged with defining M.E. as a unexplained illness retweeted a tweet in support of O'Sullivans book. Today the Irish Small and Medium Enterprise Association (ISME) jumped on Sullivan's bandwagon (no idea why) with the headline Can this book save HSE €3.5 billion?
"Dr. O’Sullivan claims the modern healthcare system is collapsing because of people experiencing physical illnesses that have no physical causes. The suffering is real; the causes may be subconscious and therefore the cures are wholly ineffective and wasteful. ...  it could be costing the Irish system €3.5 billion or a full quarter of the health budget." 
I really fail to see why ISME would be advocating this book... And suggest its members to buy it...

Page from 'Into the Light © Corina Duyn 2015 

In my own recently published Artist book Into the Light (of which you see some of the pages here) I broached the subject (among many other thoughts about illness, good and bad) of the danger of giving people with a physical illness a psychiatric diagnosis. 

I have experience of this too, and the recent focus on all in your head brings it all back, and that is giving me a sick feeling in my stomach.

Page from 'Into the Light © Corina Duyn 2015 

I was in hospital in 2013, a planned five day stay to re-evaluate where I was at in terms of my health/illness, as I had the previous months become more ill again. That week the main focus seems to be physiotherapy, which I appreciate as the therapist was understanding although a little too adventurous perhaps with suggested exercises.  But one of the main questions I was asked that week from two neurologists and other doctors, was "How's the form?" 

After fifteen years of illness I was yet again (also in 1998) referred to a psychiatrist. I was asked did I mind? No, not really, I know my life, I understand my illness.
I had a very, very long meeting with a liasion officer for unexplained neuroligical illnesses and this young woman dug as deep as she possibly could to find a reason for illness. Childhood, teenage years, school, anything she could possibly think of. 
She also asked me: "Why do you think you have ME? It does not exsist."

I found this a very dangerous statement. One I can cope with, but I was thinking about other more vulnerable people who might be ill for a shorter time, and feel under tremendous pressure to be told that their illness does not exist. Suicide is not uncommon. 

I told her of my life, how I deal with illness, that I have beautiful garden, a lovely home, that I create art and books.

The following day I met with the psychiatrist himself. The liaison officer was there and one other person, of which I do not know his role.  The psychiatrist was intrigued (his words) by my story, and concluded that he saw no psychological illness, no depression, could not suggest any medication, and felt that if I wanted to achieve something, I obviously have the skills to do that. He did not prescribe me to come to the CBT clinic at the hospital, but if I ever had the opportunity to do this in my hometown, than maybe go for it. (My GP threw that out the window)

Case dismissed. Although of course the liaison officer's notes are in my file and that was very much evident during my last hosptial stay in 2015... Oh well.

All this I had more or less forgotten, or had simply added to the list of experiences, but the recent controversy surrounding O'Sullivan's book and comments, it all came to the fore again. Not so much worried about my own wellbeing, but more for the many people living with this, or other unexplained illnesses and of their well being. 
Worries that the already minimal care and understanding will be even more diminished, and financial support being questioned. Practical support being cut back even further. And most of all that society has yet again a reason to disbelieve the expereince of so many.

Is this really just the story of one woman? Or is there some kind of lobby group behind her?
I am baffeled by her power...

ME Awareness week has suddenly taken on a whole new meaning.

I hope that the majority of people will listen to the real stories and not the stories that are in O'Sullivan's head.

Be well!

If you are interested in the Into the Light book, it is on special offer 
during ME awareness month  €25. see my shop 

Page from 'Into the Light © Corina Duyn 2015


Anonymous said...

A powerful piece of writing. It is staggering how so many physically ill people can be so misrepresented, misinterpreted, mistreated, neglected, negated and harmed by psychiatric nonsense! Yet that nonsense is heard and respected over the truth of this devastating physical disease, which is clinically ignored, leaving people to suffer for decades.

Corina Duyn said...

Thank you so much for your powerful comment.
Please share these words, this blog.

With every best wish to you