This morning, I woke up feeling good, with no pain or stiffness or numbness. Putting in my contact lenses gave me 20/20 vision and, when I saw my bus coming around the corner, I was able to run for it without falling over. I went to the loo when I needed to, without any accidents, enjoyed my meals without choking and managed a day’s writing at my computer, typing with perfectly steady hands.
Sounds pretty normal for a 41-year-old woman? Of course. But on a bright April day 15 years ago,
I didn’t think a time like this would be possible for me. That was when my life stopped being
‘normal’ – the day I was diagnosed with the incurable neurological condition multiple sclerosis (MS).
Some pivotal moments of your life are forever frozen in time, like a photograph. Receiving my MS diagnosis at the age of 25 is one of those. I can still picture the clinical room, with its white walls and harsh lighting, and see the blank features of the neurologist who told me with no emotion, ‘I am 99 per cent certain you have multiple sclerosis, which the MRI scan will confirm. Do you have any questions?’
I had a million questions but, at that moment, I was too shocked to think of any. Instead, I walked out of the hospital into the green square outside, had a cigarette, and rang my parents to tell them the bad news. My mum blamed herself, just as she always does, even though MS is not directly hereditary (there’s a genetic component but the disease may be caused by a number of factors, many still unknown).
‘I wish I could have read about the best- instead of the worst-case scenarios’
She said she wished it was her instead. Then I took refuge in a nearby pub. Over a stiff drink, I told my then boyfriend, Steve, that I would understand if he wanted to leave me, but that if he was going to do so, he should go right now. We’d only been living together for a few months. He said that he loved me and wanted to stay, and that together we would face whatever my MS might throw at me.
As someone who has never been of the ‘glass half full’ persuasion, what I expected from my diagnosis of MS was grim.
To ignorant me, the future looked something like this: I would experience progressive disability leading to paralysis and a wheelchair and, ultimately, death by choking. Along the way I’d suffer pain, blindness and incontinence. That’s what I’d seen in TV programmes and in charity campaigns. I particularly remembered a powerful advertising campaign, which I’d noticed as a teenager in the 1980s, showing young people with parts of their anatomies – their spines or eyes – torn out. At 25, I thought my life was over.
The symptoms I’d experienced in the two years preceding my diagnosis had been scary and unpleasant. They started with blurred vision and a painful eyeball, which I put down to spending too much time staring at the computer.
Instead, it turned out that I had something called optic neuritis – inflammation of the optic nerve, which links the eye to the brain. Neither the ophthalmologist nor the neurologist who treated me at the eye hospital told me it was often the first symptom of MS. They just said it would get better, which it did. MS symptoms often come and go, particularly in the early stages.
Then, about 18 months later, when I was three days into a new journalism job, I woke in the morning, tried to get out of bed and collapsed on to the floor like a rag doll. I couldn’t control my legs, which felt completely numb and tight, as if encased in a plaster cast. At the same time, the other eye became painful and blurry. It was then that my GP referred me for hospital tests. By the time my legs had got better – it took about six weeks – I’d done enough research on the internet to know that I probably had MS. Over the course of the next few months, a series of blood tests, examinations and scans confirmed it.
Before MS, I’d always been a healthy person, so suddenly having to redefine my self-image as sick and potentially disabled was extremely unsettling. I found myself a member of a club I had no interest in joining, with a horrible awareness of my own mortality. That isn’t usual at 25. I couldn’t relate to my friends, who were still carefree, irresponsible, looking forward to their future careers, going out and having fun.
While they were booking backpacking holidays to Cambodia or Thailand, I was negotiating extortionate insurance premiums for a weekend in Europe, and wondering what would happen if I had a relapse away from home. While they were spending their wages in wine bars and nightclubs, I was worrying about paying for income protection and life insurance (almost impossible for me to obtain at the time).
It didn’t help that MS is an invisible disease so, outwardly, I looked the same. For at least a year, people would greet me with the words, ‘But you look so well!’ as though they were disappointed that I hadn’t arrived, muscles wasted, in a wheelchair. Some ‘friends’ got annoyed when I had to cancel at the last minute because of crippling fatigue. One actually stopped talking to me because I couldn’t make it to her birthday drinks, even though I offered to take her out for a meal on another day and bought her a big present.
Having MS messed with my head. It may sound contrary but, for a while, being confronted with my own mortality made me feel immortal. I reasoned that now I had MS – the thing that would kill me – I couldn’t possibly get anything else, and must therefore be immune to cancer, heart disease or flu. So I smoked too much, spent too much, lived for the day, because there wasn’t going to be a tomorrow. Of course, that’s rubbish. Most people with MS, I soon learned, live a near-normal lifespan, dying of the same common or garden diseases as anyone else.
Over time, as I came to terms with my MS, I became more rational about it and began to reassess my life. Steve and I married a year after my diagnosis, but I put off having kids because, expecting the worst, I didn’t think it was fair to impose a lifetime of caring on my children.
‘Having MS messed with my head. It may sound contrary but, for a while, being confronted with my own mortality made me feel immortal’
There were positive changes too: I packed in my dull, corporate writing job and went freelance – something I’d always wanted to do – thinking that if I didn’t do it now, I might not be able to in the future. That proved to be the best decision I ever made. Within a couple of years I’d established myself as a successful freelance journalist and agony aunt. I had my first novel, Loving Danny, published in 2006. I’ve now written five novels for teenagers, and am working on the sixth, which will be published in 2013.
I also became involved with the MS Society, helping to produce and write their membership magazine, and to raise the profile of the condition. This gave me opportunities I’d never expected: an invitation to a private party at 10 Downing Street, an appearance on the catwalk at a fashion show, and
a never-to-be-repeated role as a ‘leg model’ for an advertising campaign. My pins, and my favourite red sparkly shoes, were plastered all over the London Underground, as well as on hoardings and in magazines and newspapers.
I was able to achieve all this because something unexpected happened: my MS didn’t progress as I’d feared. I continued to have sporadic symptoms – tingling, numbness, electric-shock-like pains and pins and needles, plus fatigue and occasional distorted vision – but I stopped having proper relapses. It turned out that, like approximately 25 per cent of people with my condition, I have what’s known as benign MS. It can only be diagnosed retrospectively, ten to 15 years or more after initial diagnosis, when there has been little or no disability progression, so nobody could have predicted this. Nor did they mention its possibility to me. It was a case of watching and waiting.
Having benign MS makes me very lucky. Of course, I’d be luckier if I didn’t have MS at all, but, given the terrible experience of many people with the condition, the fact that I am still mobile and able to live an active life is something for which I am truly grateful.
On the other hand, having benign MS is rather a poisoned chalice. I feel as if I am living in limbo, neither ill nor well. I often feel guilty, even a fraud, when I’m among people with more severe MS at charity events.
At a party, one woman in a wheelchair watched me walk across the room to a buffet, then questioned whether I really had the condition because I walked ‘so easily’. People have stopped asking me how I am; having an incurable illness is not as unusual in your 40s as in your 20s. But I’m not always quite fit enough to function completely normally in the wider world, or allowed to forget I have MS.
I live with daily uncertainty – could this niggly new symptom be a relapse or will it disappear in a few hours? I still worry about planning anything too far ahead, or journeying anywhere too remote.
And, unfortunately, ‘benign MS’ doesn’t always remain benign. The disease is still active in my brain. As statistics show (after 20 years, the 25 per cent of benign cases has reduced to 15 to 20 per cent), I could get worse and may still be facing future disability. Again, all I can do is watch and wait.
I continue to have to deal with the implications of the MS label on insurance (it’s always more expensive), on relationships (there’s always a chance that I may become dependent) and on my employment prospects (I haven’t applied for a job since my diagnosis, as I’m freelance, but know many people with MS who have been discriminated against). For me, having benign MS is a bit like being forced to drag around a heavy, dangerous dog, which might, without warning, one day jump up and bite me.
Sadly, my marriage to Steve has not lasted and we are going through a divorce, although this has nothing to do with my MS. I always feared that nobody else would want to take on my condition, but that hasn’t proved to be true. My boyfriend Mickael, who I met in France while writing one of my novels, has taken it in his stride, with a typical French c’est la vie attitude.
We are now expecting our first child. Having put off having children for so long, I decided I couldn’t throw away the chance of a family on what might never happen. Women with MS are no longer told not to reproduce; studies show that pregnancy hormones actually improve symptoms and, although there’s a higher chance of a relapse following a baby’s birth, there’s no long-term impact on future disability.
Sometimes, when I’m feeling well, I wonder if I’d have been better off not knowing I had MS. If the doctors hadn’t told me, I’d just have put my weird symptoms down to something else and got on with my life. Then again, with around 80 per cent of people with MS developing some level of disability within 20 years, it would have been irresponsible of the doctors not to tell me. I’m also aware that people like me are very useful to researchers who are trying to find out why some people’s MS progresses more quickly than others. Is it something I’m doing? Something I’m not doing? My genes? Or just jolly good luck?
I do wish I’d known that MS could follow such a mild course when I was diagnosed. I wish I could have read about the best- instead of the worst-case scenarios. The problem is that people like me don’t engender sympathy or the desire to put your hand in your pocket, so charities tend to ignore us. As a result, the world only sees the most serious cases. And many people with benign MS choose to remain invisible.
In a strange way, I’m glad I was diagnosed with MS. It gave my life a focus. Without it, I probably wouldn’t have gone freelance or penned my first novel. I wouldn’t have got involved with the MS Society, or encountered many of the wonderful people I’ve met.
So, if I could beam myself back 15 years in time, into that diagnosis room, I wouldn’t say, ‘Don’t worry, your MS isn’t going to be a big deal.’ Instead, I’d give myself a hug, tell myself that whatever happened I would cope and that life would still be good. Ultimately, I would change nothing.