Editor’s Note: This article is reproduced with permission from InterAction magazine, the quarterly publication from the UK charity, Action for M.E. To find out more about support services provided by Action for M.E. to sufferers and their carers, please send email to firstname.lastname@example.org or mail a self-addressed stamped envelope to Action for M.E., PO Box 1302,Wells, Somerset BA5 1YE, or telephone(in the UK) 01749 670799.
‘It takes courage to face the unpleasant feelings that resting and dependence on others brings up’
Those of us with M.E.[Also known as Chronic Fatigue Syndrome] are seldom described as brave. It is an adjective reserved for those with other illnesses and disabilities. A lot of people think that if we just pushed ourselves a bit more and whinged a bit less we’d be OK. Courage is an admirable human attribute. To talk of someone being brave implies respect for them, so to deny courage in ME sufferers is very hurtful to us. ME has made me re-think my view of courage.
The Douglas Bader model
I think the ideas of courage which I grew up with in the 50s and 60s are still widely held today, especially by and of men. Courage in the authorized version consists mainly of pushing oneself in great adversity to do two things: to carry on functioning as normally as possible and to show no sign of distress. This might be called the Douglas Bader model of courage. Bader was an admirable and remarkable man, who had great inner strength and determination. He was a Second World War fighter pilot who lost both legs in combat. He learned to use prostheses, returned to combat flying against everyone’s advice, and became one of Britain’s great war heroes.
This model of courage underlies a huge number of plots of books, TV programmes and films. It is almost a cliché for a seriously wounded and/or exhausted character (almost always male, incidentally) to shrug off others (often female) who implore them to rest, get treatment or otherwise take care of themselves. Real men don’t do that while there’s a job to be done, and toughness and resilience see them through.
They push themselves against pain, exhaustion and fear until at the end they collapse into the arms of a waiting adoring woman and as the credits roll we assume that everything will be fine from now on.
Hard to ask for help
As a boy I yearned to be like those heroes, but what is required with ME is the exact opposite. Pushing myself is disastrous and makes me ill. If I push myself more than a tiny bit, it take days to repair the damage. This means that I have to rest a lot and ask others to do things for me, and both these things make me feel anxious, insecure and worthless. Certainly this is not how I was brought up to behave. Once, when forcing myself to acknowledge how tired I was, and going to lie down, I remembered hearing Bader himself on the radio when I was very young. He was talking about being frightened and said; ‘A brave man is one who is frightened, but goes ahead with what he has to do in spite of the fear.’
It occurred to me that perhaps a brave man is also one who feels anxious, insecure and worthless when resting and taking care of himself, but continues to rest in spite of these horrible feelings. It takes courage to face the unpleasant feelings that resting and dependence on others brings up. There is a strong feeling that we ought to be saying the equivalent of ‘Damn the doctors – what do they know? I’m getting back into my Spitfire.’
It takes courage to face the dark worries about what others may be saying about you – perhaps that you are lazy, or that you lack the moral fibre to fight your illness, or that you have no real illness.
A new kind of strength
I have been a man with the physical strength and the practical skills to do things for myself and others, and the intelligence and drive to pursue a successful professional career. All of this is the sort of thing which most men (me included) rely on for a sense of self-esteem. At the moment I have almost no physical strength, which means that I cannot use my practical skills, and a lot of the time I have precious little intelligence either. I have had to leave my job. Throughout my working life I pushed myself against fatigue and illness to keep working, and to break this deeply ingrained pattern of behaviour brings me face to face with the awfulness of my loss. How much easier it is to keep doing something even when I know I will be terribly ill later. The difficult thing is not to keep going when I feel unwell – that just kids me into an illusion of security. What really takes guts is to stop, to rest and to cherish myself before I reach the point of collapse.
We should recognise and celebrate in each other the courage which we show in doing what has to be done. For most of us this is giving up much of our independence and giving up much of what we have relied on for our self-esteem. It is very hard to do: perhaps we should hear the word ‘brave’ more often.