Twenty something and MS - alternative views
Open Door - May 2009 pages 8-9
In the last issue of Open Door, a young man wrote about his response to his diagnosis of MS in his early twenties and how it had impacted on his view of the future. Read the article.
We received several comments about this article, two of which are published here.
I am 26 and was diagnosed with relapsing remitting MS three years ago. If I had read the young mans article then I would have been even more angry, because when I was coming to terms with such a diagnosis the last thing I would have wanted to read was that I was to be 'haunted' by a 'MonSter' and that my life was to become a living 'hell'.
Dark thoughts run through one's mind, and the idea that you are mortal is a real shock to the system of someone so young, but there are many ways of communicating these fears and worries. The young man himself admits that there is no good time to receive a diagnosis of a chronic, debilitating disease. No one EVER wants to hear their doctor deliver that news. But what young people (perhaps more so than someone older and more life-experienced) need at that time is a sense not that life is over, but that it can become richer, more fulfilling and more rewarding than ever before. Yes, life may change beyond recognition for some people, but with the right outlook and attitude we need not become 'entombed' by our disabilities.
Twenty somethings live with a sense of immortality that is simply a part of being young, healthy and new in the world. My diagnosis showed that I am flawed and mortal; that my body won't always work properly, my eyes might not focus, and my energy levels are not as boundless as I had once taken for granted. But it has given me the imperative to grasp life with both hands and live it to the full, every day. My world might be punctuated by daily rest periods, going to bed early, and planning and preparing for something big and energetic, but nothing will stop me doing it all.
So many young people waste their energy and youthfulness because they do not appreciate it. My MS was a slap around the face - but one that woke me up. What do I really want to do with my life? OK, let's do it now, and if, when that's done, and I can still do more - bring it on. Yes, it was really hard to think about starting a career, and it was really difficult to find anyone who could help, but it has worked itself out.
I am glad I got a diagnosis at 23, and not at 43. I might have wasted 20 years in a job I didn't really want to do, wishing I'd found the time to learn to ski and take up all the other opportunities along the years. There will be no mid life crisis for me - I won't wake up one day regretting that it's now too late to do all those things I wanted.
No one knows how your MS will progress and I think that is the most important thing to get across to those diagnosed young. He says we just have longer to suffer the 'ravages of the disease'. I prefer to think more optimistically, keeping in mind that anything could happen, but making the most of now. As my boyfriend said, he might be hit by a bus tomorrow, and I might find myself caring for him, and not the other way around. No one knows what will happen, there is no point dwelling on the dark stuff.
Reading the article was like reading an extract from my own diary, documenting the thoughts and feelings that I've had over the last six years with MS.
I was diagnosed in 2003 at the age of 17, smack bang in the middle of my A level year, and was unfortunately hit quite hard, quite fast. Although I'm still physically able, I am left with what I term 'crippling fatigue'.
One of the first leaflets I read in hospital while I was being acquainted with my new companion told me that "most people with MS are diagnosed from their mid 30s to mid 40s". "Oh my god", I thought, "I'm the only 17 year old in the world with MS". I'm from a small city in a rural county... what were the chances of me meeting a contemporary? The feelings he describes are the exact feelings I had, and still have regarding my age. Completely unprepared for life, I had NO job, NO qualifications, NO savings, NO house, NO mortgage, NO husband, NO kids, NO insurance, NO EXPERIENCE. And the questions this leaves you with, questions with no answers, are unbearably overwhelming. What am I going to do? What is going to happen? I still don't know.
One thing I had and am still blessed with was the love and support of my mum and dad. But at 17 aren't you supposed to spread your wings and leave them behind, not become dependant on them once again? Although they have been a great support, it led to a fight for freedom and independence I believe would not have happened a few years down the line.
I can often feel totally alienated by articles in MS publications which aim to be uplifting and inspirational. I appreciate their aim, really, I do, but just sometimes I want to know I'm not alone when I'm feeling utterly fed up. I don't believe in the concepts of positive or negative thinking. People are people, we laugh when we're happy and we cry when we are sad. And we are perfectly entitled to feel whatever we need to feel to cope with today. I consider myself a happy person, but that doesn't mean I don't hate having MS and the effect it has had on my life. That's not the same as hating life. I didn't find the article positive or negative, just truthful and written openly, from the heart.
Once your body starts to change, life changes. My marathon shopping trips have been swapped for internet shopping. Walking and buses swapped for taxis. Four inch stilettos swapped for ballet pumps, clubbing swapped for quiz nights at my local boozer and skiing and scuba diving for scrapbooking and jewellery making. I would give anything to have things the way they were, but things could be worse than my new slower, some might say boring, pace of life. But it suits me, it's pragmatism in practice.
"Twenty something and MS" was a great comfort to me, and I hope lots of other people of any age. No one claims that the physical and emotional effects of MS are worse for young people. Nothing in the safety net of life is guaranteed at any age, but having those few years under your belt is invaluable. There's a lot in life I've missed out on. I do try not to dwell on this and focus with getting on with what I CAN do rather than whinge about what I can't. But at 3am when you can't sleep and your face hurts like mad, it's difficult to raise a smile.