I was diagnosed with Multiple Sclerosis (MS) in 1988. Married with two small children, a mortgage and an overdraft. The day the doctor said “You have MS”, my life changed forever. At that time MS had no known cause, no treatment and no cure. Any plans I had for the future were left swinging in the wind. The cause is still unknown, a cure has still not been found but there are many treatment options available now and more in the pipeline.
How did I feel on hearing those unforgettable words? It was 30 years ago and memories dim with time, and MS, but I do remember being overcome with emotions, crying and wondering what path my illness would take. I did take heart from the fact that a maternal uncle had been living with MS for more than 20 years and he was doing fine.
Did I feel inadequate after the diagnosis? Certainly not in the immediate aftermath, and probably not in the early years while I was feeling good. I felt so good that I sought a second opinion after ten years. This unfortunately confirmed my diagnosis. Deep down I knew I’d been grasping at straws- the signs and symptoms had become more apparent and I knew the downward slide had begun. I started medicating at this point.
I never saw myself in the classic ‘hunter gatherer’ role but I knew that as time passed any role I would, or could, play in our family life would be seriously affected. Jean and I discussed it and agreed that we couldn’t rely on my ability to remain in gainful employment and bring in a steady income and from then on Jean donned the mantle of bread-winner. I was no longer ‘the man of the house’, although I remained in full-time employment for a further 22 years. MS had relegated me to the second division. That was the first knock to my manliness and many more knocks were to follow over the years.
I was afraid of being perceived as lazy as long as my illness remained invisible. That’s not to say I wanted everyone to know I had MS. It was my private torment and I didn’t know how to handle its invisibility. All of the people who mattered to me had learned to live with, and accept, my constraints a long time before I did. I slowly came to realise that I was the only one who looked at me the way I looked at me.
Jean never made me feel inadequate or lazy, that was all down to me. My share of the housework was to look after the garden but I always felt I should be doing more. One of my earliest pieces of Assistive Technology was a ride-on lawn mower obviously needed to cut the grass but also to move tools etc. around. Every job took much longer for me, used twice as much energy and in 2014 I threw in the towel on that particular activity.
I was never a big drinker but I did enjoy having a few pints. I never had a ‘local’ as such but even that ‘not drinking much’ suffered from MS; I was no longer comfortable going to a pub. The prospect of wobbling my way to the bar or toilet became too much of a struggle and I was very much aware of people watching and silently passing judgment. I’m not drunk I have MS.
Men of my age group are not great at discussing and sharing our thoughts and feelings and I am no different. I kept my feelings of inadequacy under tight control. There was no reason to burden anyone else; suck it up and get on with life.
I would urge other men living with MS not to suffer in silence but to seek out help and talk about it.