Wednesday, 5 October 2011

Dystonia is Definitely NOT 'all in the mind'

Dystonia is a painful, often crippling disease of the nervous system, classed as a chronic, long-term condition under the Equality Act 2010. It is a Neurological disorder that has no cure and can - often - make the sufferer contemplate suicide. In fact as a sufferer myself for 11 years I cannot honestly say whether acute mental pain is worse than the pain caused by Dytonia's involuntary muscles spasms. All I know is that - speaking as a suffer of both conditions - they can have the same debillitating effect that could make you self-harm or, worse, lead you to want to stop the pain by ending your own life. Yet, one is a physical condition and the other a 'mental' one, which automatically carries with it the added pain of stigma - even from those who are supposed to love you and care for you. So, how can you tell the difference ?

From my own experience, I had suffered from anxiety as a small boy, visiting St David's hospital many times, before the diagnosis was offered to my mother. I became a nervous child, with a high gag reflex, and stomach cramps at every stressful situation - such as being forcibly anaesthetised. I learned to deal with my hidden fears by acting out the role others wanted to see - a normal, active and sometimes naughty child, with no father to correct me or to act as my role model.

My first experience with depression is described, briefly, in an earlier post. Sometimes I felt confident and strong - particularly at school or in work where I could drive myself to be better than others, even if this wasn't achieved. The danger points in my life were the ones that brought the anxiety depression back, with a vengeance. Marriage difficulties, children's illnesses, losing a job ( and I lost 7 in all ), along with two marriages and a partnership that was weeks away from becoming as permanent as my first two failures. It doesn't take much to lose your self-esteem, your confidence, and the esteem of your own family. Such events take you into a vortex, pulling you down relentlessly, until you finally see death as the only option open to you. Be aware that stress will exacerbate the symptoms of both conditions, so do all you can to avoid any of the stressful conditions that life throws at you as ( supposedly ) 'Character Building exercises'.

With Dystonia, my symptoms started the year before my angina attack and subsequent heart surgery in 2000. Unfortunately, it went undiagnosed for over a year, with my own doctor telling me that my constant eye-blinking was a habit that I should simply stop. So easy, you'd think. My GP even told me that if I persisted with this 'habit' that he would refer me to a psychiatrist 'because of my mental history'. Those damning words stung me to see a psychiatrist within weeks. Fortunately,he knew the difference between Anxiety Depression and a condition he named as 'Dystonia'. He arranged a referral within a week to an opthalmologist, Dr Robert Walters at UHW. Within an hour of seeing this caring man, I was diagnosed with Segmental Dystonia, which he said was caused by damage to the nerve ganglia (Basal) at the base of the skull, as a result of an illness or an accident. The word 'incurable' followed, making me care less what the cause was of this disease of uncontrolled muscle spasms around my eyes. Even though he offered a variety of treatments, including the 13 stinging BoTox injections I have to endure every 8 weeks, I realised that I had been stigmatised as being 'mental' by my own GP. ( On reflection, the needles hurt more than the stigma did, and still do ! - R.W. )

The point of this post is not to rush into any hasty opinion about what troubles your neighbour, your friend, or even a family member. They could be twitching, blinking or crying out of despair. They could be suffering from Depression or Dystonia, but it hardly matters which, as both conditions require your empathy, your sympathy, and your understanding. So next time you see someone twitching, with their neck or their arms bent in a painful spasm, don't judge them as being 'mental'. The same goes for someone sad and crying - in fact - don't judge them at all, as both conditions inflict pain that requires treatment and not scorn. R.W.

N.B. ca 30,000 people are diagnosed as having Dystonia of one kind or another in the UK. However, approximately 10m people suffer from some kind of neurolgical disorder, with awareness and understanding of Neurology among healthcare professionals not what it should be.

Links to the Dystonia Society via e-mail enquiries to

Also, visit

1 comment:

  1. I remember a poor lady who used to get the same bus as the one I did from school. She used to have really involuntary, and no doubt painful, neck spasms which made her head move up and down sharply and without control.

    At the time, being a school child, we used to giggle to ourselves about her but when you grow older and realise how it must feel to suffer with these incurable illnesses, I now feel awful about it.

    I hope that you don't feel there is no light at the end of that tunnel Robin because you have impacted a lot of peoples' lives for the better - including mine.