Published in The Daily Telegraph on 8th August 2018 . The original article can be viewed here
What it’s like to live with severe ME
by Naomi Whittingham
Today is severe ME Awareness Day, dedicated to those who suffer the worst effects of Myalgic Encephalomyelitis. Naomi Whittingham describes life with severe ME
Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation.
I have had ME since the age of twelve, after catching a routine virus from which I never recovered. Within months I was unable to move, speak or open my eyes. I had to be spoonfed. Constant, agonising headaches forced me to lie in a dark and silent room. I was so ill that my family and doctor feared I could die at any moment.
ME affects around 250,000 people in the UK, with 25% so severely affected that they are house or bed bound. It is now widely recognised as a neurological condition although some doctors still mistakenly believe the cause to be psychological, or that it can be cured by exercise. ME involves every bodily system and symptoms include flu-like malaise, severe pain, muscle weakness, cognitive dysfunction and acute sensitivity to sensory stimulation.
After spending my early teenage years in a death-like state, I began to slowly improve. At 37, I remain in a wheelchair most of the time and dependent on full-time care from my mother, now 63, but I consider myself fortunate. If you met me during a better spell in the day, you might not realise there was much wrong with me. You wouldn’t see the collapse into bed afterwards; the desperate need to lie in silence to prevent an escalation of symptoms such as pain, muscle jerking and vomiting.
My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up
In the twenty-five years of my illness I have watched my peers become teenagers and then adults. My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up. I have had to re-build self-belief from the shattering effects of having a misunderstood illness. It is destroying enough to experience the collapse of every bodily system; it brings one close to ruin when the cause is suggested as lack of motivation or a wish to escape life.
I have never driven a car or made a journey unaccompanied; I have never had a job or a boyfriend or a home of my own. I will never have the children I would love. For many women this last would be a devastating blow. Swamped by so many other losses, I barely register it.
Chronic illness is a bereavement: a lengthy grieving for shattered dreams. Despite this, I am not a tragic figure. Decades of intense suffering have given me a deep appreciation of life, of the simple pleasure of a sunset or spring flowers. I have a wide network of friends with ME and those of us who are well enough communicate through email and Facebook.
Chronic illness is a bereavement: a lengthy grieving for shattered dreams
Recently someone asked me what I would do if I were well for a day. The possibilities for that one, cherished day not confined to bed or a wheelchair are too numerous to comprehend. Getting out of bed unaided, stepping out into the garden, making a cup of tea, styling my hair, shopping, going to the sea for the first time in years: basic, spontaneous activities which most people take for granted.
For me and thousands of others locked in this prison, the only prospect of release lies in quality biomedical research, of which there is far too little. There are promising developments in the study of viruses and immune abnormalities, and the hope of identifying diagnostic biomarkers and eventually drug treatments. But lack of funding means that progress is slow and in the meantime lives are wasted.
I will never get my youth back; but progress in understanding ME is urgently needed, before future generations lose theirs.
Voices from the Shadows, an award-winning documentary, tells the story of several severe ME sufferers, including Naomi and Sophia Mirza, who died aged 32.
In a discussion on the Telegraph website, I shared the following comment:
Thank you to everyone who has contributed here. I am not well enough to engage in an ongoing discussion myself, but, as the author of this article, would like to respond to a couple of points that have been raised.
Firstly I feel it is important to acknowledge those too ill to participate in this discussion in any way. It is impossible to overemphasise the gravity of the most severe cases of ME. As others here have described, they are totally bedridden and forced to exist in darkened, silent rooms because any sensory stimulation results in a catastrophic escalation of symptoms. Many are on morphine and tube fed. It is a level of illness that is shocking to witness. For these very severely affected ME sufferers, every moment is a battle to survive. Some do not survive. Some never improve. The level of suffering has been compared to the final stages of AIDS or cancer, yet little or nothing is available by way of medical support or symptomatic relief.
A recurring misconception about ME is that sufferers are prejudiced against mental illness. This is far from true. Living with a marginalised, misunderstood illness tends to give one greater understanding of all types of suffering. When a psychological explanation for my illness was repeatedly offered, I worked hard to accept it. It is through the failure of this approach to help me, and countless others, that I now reject the notion of a psychiatric component to ME – not because I am prejudiced against mental illness. There is inevitably a psychological aspect to having any illness, inasmuch as there is a psychological element to being human. Support aimed at addressing the significant emotional complications of severe illness – particularly in childhood and adolescence – can be of great benefit, and at times has been for me. I do not know anyone with ME who would reject this. Problems arise when psychiatric and psychological interventions are used in an attempt to treat the underlying illness. Far from refusing to engage with such treatment, many ME sufferers have pushed themselves way beyond their limits to follow therapies prescribed by doctors lacking a true understanding of ME. Many have been made irreparably worse as a result.
What ME patients object to is not so much the suggestion that we could have a biological mental illness – though I cannot think of any ME experts or patients who would consider this an accurate description – but claims that we do not have any ongoing disease process at all. What is deeply offensive is the idea that ME sufferers are, intentionally or otherwise, creating a set of symptoms in order to avoid life; that the condition amounts to little more than maladaptive illness beliefs and that recovery could be achieved if enough effort were applied. Anyone with neurological ME knows from long and bitter experience that this is emphatically not the case.
For anyone wishing to learn more about the extensive biomedical evidence available, I recommend the websites of ME Research UK, IiME and Stanford University.
The Voices from the Shadows website is also very informative
The lack of appropriate research into ME is scandalous, but even worse is the lack of compassion and respect too often shown to sufferers. If I could change one thing today, it would be that.
Thank you again for your comments.