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Twenty something and MS

Gus Alexiou

Open Door - February 2009 pages 6-9

My MS haunting began back in the spring of 2003 when I began to experience odd physical manifestations - washed out vision and tingling sensations which felt like insects crawling inside my limbs. I call it a haunting not because I think there is anything supernatural about MS but because its symptoms behave like a neurological poltergeist; unpredictable, unseen, capable of wreaking havoc only to disappear as quickly as they arrived. As MS patients however, we are both the haunters and the haunted because what the disease takes away from the old confidence - the old swagger and the old sense of being safe, content and capable in our own skin - can make ghosts of us all.

Diagnosis

I was officially diagnosed in March 2004 following a year of suspicion, worry and speculation. I will always remember one particular conversation that I had at the beginning of this process. It was early on a Friday morning and I had just got off the tube and was on my way to the hospital for an MRI scan. As I walked I looked out on a very different landscape to the one I knew was really there. Colours were faded and shapes and light distorted as I walked beneath the rays of a black sun. Bilateral, sequential optic neuritis my neurologist had previously noted, quite rare and rather unfortunate. As I walked I rang my office to tell them what time I thought I'd be back from the scan. "Not to worry" chipped in my line manager "it's probably nothing, you're a young chap". It was like telling me not to worry about the circling sharks because I could always swim. Little did he know that youth is no kind of protection against MS - the disease has always had a taste for the blood of the young.

Clearly there is no such thing as a good age to be diagnosed with MS but I think because this is so obvious, it is easy to ignore the different implications of being diagnosed in your twenties as opposed to say your forties. A person diagnosed in their forties has the benefit of the best part of two additional decades of normal, healthy life experience over the person diagnosed in their twenties. Not only is this time and experience priceless, it is also the case that by the time the person in their twenties reaches their forties, they will have had to deal with the ravages of the disease for two decades.

Golden years

Woman looking pensive

The real difference however comes from the unique challenges of having it all still to do after an MS diagnosis which arrives before you have had a chance to settle into your adult life. It is one thing to have to reassess career, personal life and family priorities in the light of MS but quite another to have to establish them from scratch in the face of it.

As young people with MS, we are not naïve. We are acutely aware that we are missing out on our golden years simply because we were in the middle of living them when the disease barged its way into our lives. Your twenties is that time when increased life experience combines with the continued vitality of youth to produce all kinds of adventures and life lessons. MS warps this by overloading the life experience side with heaviness and sorrow too intense for one so young, while removing the vitality of youth aspect altogether. The result can be that we become the lost ghosts of our former selves trying to reconcile ourselves to something which is anathema to the spirit of our age and values. In many ways we become spectres at the feast of life going on around us.

In some senses this feast is a myth. Regular life, just like life with MS, can be full of pain and hardship with occasional pockets of happiness but that really isn't the point. When you have smelt the foul breath of the aptly named MonSter in your face, you feel you have visited an altogether different place - more like the seventh circle of hell than the world you once knew.

In my case, my MS world even looks different due to my altered vision. Now I dream of simple things like casually chatting while walking with a friend without worrying that the next step might be the one to send me tumbling. It is hard not to feel like the spectre at the feast when what you want more than anything is consumed so readily not by some social elite but by the vast majority of the planet. It does not matter that most of the diners have no sense of smell and don't appreciate how good the food tastes because I can smell it from here.

No easy answers

Man looking pensive

So, is it just a case of damned if you have MS, doubly damned if you get it young? There are of course no easy answers that make it okay to have a chronic disabling health condition. No master key to unlock the MS trap door. Yet I know that there are some people, including those diagnosed at a young age, who have led rich and fulfilling lives and despite their symptoms have faced down the MonSter refusing to allow it to break their will or their spirit.

MS often rewrites the rules of the game and shifts the goalposts. As people with MS we should be open to doing the same in our efforts to regain control of our lives, rather than clinging on to the old ways and being heartbroken when things inevitably don't work out the way they used to. Sometimes an almost ruthless pragmatism is required which could involve anything from getting a cab when we normally would have walked, sitting down to do the cooking or washing up or taking advantage of the communications revolution and trying to work from home. As young people it is sometimes harder to make these adjustments because we are preoccupied with being 'normal' and want to participate in the prime of life activities we enjoyed prior to diagnosis.

Trying to redirect the negative emotions so empowered by the disease is easier said than done. Anger, despair and frustration are all part of the course and in trying to be positive, it is easy to feel that one is rowing against the tide. As young adults in particular, we feel that we have been cheated and robbed of our opportunity to show our true selves to the outside world. How unfair it is that the person we know we are inside has been so entombed within the symptoms of this horrible disease. How will a society obsessed with constantly reinforced media images of youth and beauty ultimately judge us?

As instinctive as it may be to follow this train of thought it is perhaps worth considering an alternative perspective. If we can still carve out fulfilling lives for ourselves in spite of something as undeniably massive as MS, what does that suggest about the real nature of our 'true selves'? Yes, our human frailty has been exposed but we also have an opportunity to show how very strong we really are in a manner that goes well beyond some of the more superficial shows of strength that may preoccupy many of our peers.

As the saying goes, "you don't get to choose which cards you're dealt in life but you can choose how to play them". I once heard a young chap discussing his MS diagnosis on a radio interview. He referred to his childhood when he would go and watch matinees at the cinema and the feeling he would get when he came out of the dark cinema and into the sunshine of the outside world. He described his MS diagnosis as the opposite of this process, like moving out of the light into a world of permanent darkness. It is a powerful and valid analogy but the truth is, if you can still shine in such darkness, you will illuminate all that surrounds you.

Separate satellites

Several yellow figures and one blue one

Any neurosciences professional will tell you that MS is the most common cause of neurological disability amongst young adults. Despite this obvious strength in numbers, there is little sense of community amongst young people with MS. We generally live as separate satellites. In the past MS charities have faced criticism for not making adequate social provision for younger people, instead lumping people of all ages and abilities together for dull, uninspiring coffee mornings. For me however, this is like a teenager blaming their mother for not inviting their friends round to play anymore. Surely in this internet age with the plethora of social networking sites, young MSers can do something for themselves?

Before this can happen I believe a shift in mindset on the part of the majority is necessary. For many young people with MS, seeking out others with the condition smacks of being part of a 'support group'. This is understandably an unattractive proposition for the young and newly diagnosed, who at this stage are looking to distance themselves from their disease and want to believe that a normal life is still within reach.

Understandably the problem is that the young person avoids such meetings and gives up on the idea of meeting others like themselves. This would be totally fine if it wasn't for the fact that the sense of isolation and feeling that they alone are dealing with the distorted reality which comes from feeling old in a young body, still remains. A vicious circle begins whereby social networking becomes the refuge of only the most socially isolated and/or physically disabled. This in turn puts off those with more moderate MS who wish not to see themselves as part of a circle of the damned but nevertheless are struggling to come to terms with their diagnosis and would benefit from having some friends in the same age group dealing with similar issues.

It is little comfort to a twenty-something with MS to hear from some old lady about how useful her grandchildren have been in helping her cope around the house. Young people with MS, especially the newly diagnosed, not only need friends, they need role models. They need to be shown that the disease will not necessarily progress in the manner that worries them. And even if it does, it does not necessarily mean that a career, partner, children, hobbies, interests are now off the radar.

Of course, I am not advocating that every young person with MS should be part of a group. One is unlikely to be close friends with someone for the sole reason that they have MS too. However, if you happen to meet someone you would have made friends with anyway because you have a similar outlook on life, interests or sense of humour etc, you have potentially met a very valuable ally. Someone who can make you feel you are not facing your troubles alone in an entirely different way from the support one might receive from friends and family.

It is a great pity because fortunately or unfortunately depending on how you look at it, there are enough numbers out there to mean that no young person need stand alone in their fight against MS. It does require a community mindset and a willingness to seek this out in order to join the dots and make it happen. New friends with MS are not intended to replace the old friends we knew prior to diagnosis but simply to be a welcome addition to an unwelcome reality. In such a way we can complete the journey as young people with MS through to becoming old veterans and, if medical science delivers on some of its promises for the upcoming years like stem cell research and ever more effective immune modulation, then dare I say it, we may as one celebrate the day they finally slay the MonSter.

Gus has also written on this topic in a recent issue of the British Journal of Neuroscience Nursing

We received several comments about this Gus's article, two of which were published in the next issues of Open Door. Read Twenty something and MS - alternative views

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