A Life Hidden - Blog posts by Naomi Whittingham

Andy

Andy

Senior Member (Voting rights)
Moderator note:
We've merged a number of threads to collect Naomi's blog posts into one thread.

An article originally printed December 2016 but now updated with an audio version as well.
I live in a world largely hidden from view. Most of my neighbours do not even know that I exist. I was last seen as a child walking home from school 26 years ago. In the decades since, I have rarely left my house; when I do, it is in a wheelchair.

Myalgic encephalomyelitis (ME) struck suddenly for me, with a viral infection, although for some the onset is more insidious.

Within a few months, it had stripped me of the ability to walk or talk, to move my arms or to open my eyes. It entombed me in such agonising pain that life was reduced to the drawing of each breath. My family and doctor expected me to die at any time. I survived, but for years it was a living death. I was too ill to tolerate any stimulation, and knew nothing but pain and complete darkness.

My personal experiences have moved me to campaign for greater awareness of an illness that affects an estimated 250,000 people in the UK, and millions worldwide. ME has been recognised as a neurological condition by the World Health Organisation since 1969. Symptoms include overwhelming fatigue made worse by exertion, pain, sensory sensitivity, sleep disturbance and cognitive dysfunction. The level of severity varies greatly between individuals, with most sufferers able to maintain a degree of presence in the outside world.
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https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood
 
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When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
 
Graham said:
When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
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Surely you forget St Esther? All that dedication and money and no clearer as to how to diagnose ME
 
Naomi Whittingham said:
Footnote. It is important to say that this is my personal perspective and will not be representative of all with severe ME. A supportive, loving family and improvements in my condition have allowed me to find meaning in my life, despite its huge limitations. In this respect, I am one of the lucky ones. Others are not so fortunate and face a relentless battle simply to exist. Those living with this illness and struggling to see any purpose are not lacking strength – on the contrary, they are the strongest of all.
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Good of Naomi to make this point. It's often overlooked, since media articles and films etc are, almost by definition, usually written by or about those a little less severe, or about the very severe who have supportive family.
 
Indigophoton said:
Good of Naomi to make this point. It's often overlooked, since media articles and films etc are, almost by definition, usually written by or about those a little less severe, or about the very severe who have supportive family.
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Agree! It also turns my stomach each time I see the oh-so-old-angle; patient came down with whatever, simply wouldn't accept it and is now doing much better. Bah!
 
Graham said:
When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
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I agree Graham. My husband and I were 28 when we were first ill, but we had been able to go to uni, travel, work, get married so luckier than so many.

I'm really sorry Eagle and others who have missed out on so much of life x
 
Graham said:
When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
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Strong fellow feeling here, @Graham. I was lucky to be healthy to age 40, my daughter got ME aged 16, though it had probably started sooner, as she had a gradual onset. Now 37 she has had no life apart from living at home with me. I am humbled by how stoically and without self pity she copes and makes the best of the little she can do.

Naomi's article is beautifully written and so so sad but uplifting at the same time.
 
From FB:

Voices from the Shadows
A moving, informative and beautifully presented new website by advocate Naomi Whittingham, with her collected writings and much else...

Words from a Hidden World

Welcome to my blog. The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time. I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control. (The downside is that any mistakes are on me!)

On the occasions when I wrote in the national media, I was able to reach an audience I could never hope to through a blog such as this. At the same time I was very aware of having to fit my writing into a mould that had been created by other people.

One could push at the edges but never completely break that mould. Factors such as editorial policy, legal constraints and word count all heavily influenced what could – and, perhaps more significantly, what couldn’t – be said.

Here I am free of many of those limitations, but face a different challenge.

How to reach people who are not already well aware of everything I have to say? In general, ME advocacy is beset by this problem: we put huge effort into raising our voices, but very often the only ones listening are others in the same situation.
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Alive but barely living: the severity of ME is rarely acknowledged in the mainstream media


https://alifehidden.com/2018/11/25/words-from-a-hidden-world/

eta: there is a lot on this site well worth sharing.

eta2:
"So today I take this new direction with my writing and add my voice to all those speaking out online.

I hope that many will relate to what I have to say, particularly now that I can express myself with greater freedom than previously.

I also hope that my words will reach beyond ME circles and into the wider world.

Our lives have been hidden for too long."
 
In September 2016, I contributed to a training course for junior doctors at my local hospital. The following was used as part of a seminar entitled “Patients and doctors as partners in learning”. I used the term ME/CFS for this piece, as this is how ME is known within the NHS

Introduction
As a doctor, and perhaps especially as a junior doctor, there will no doubt be occasions when you are overwhelmed by the demands placed upon you. Times when you will feel powerless in the face of suffering and frustrated by the limitations of medicine. What you might not realise – and could easily forget in your most difficult hours as a doctor – is that in every single encounter with a patient, you have the potential to transform their life.

You can do this through something incredibly simple: by listening.
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https://alifehidden.com/junior-doctor-training/

 
"Remember that history does not always look kindly on beliefs that were once firmly held by the medical establishment. In relatively recent times, for instance, homosexuality was held to be a mental illness warranting the most barbaric treatment. Before challenging a patient, a wise doctor might first question the accepted orthodoxy of the day."
 
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