Multiple sclerosis came into my life, overnight, when I was 25, announcing its arrival by removing all feeling in my legs while I slept. When I woke up and tried to stand, I fell over, like a rag doll. I was three days into a new job, nine months into a relationship and life, as I knew it, was over.

Since then MS has been lurking in the shadows wherever I go, stalker-like. Sometimes it tortures me by pressing an electric cattle prod into my face, sticking pins in my feet, or binding my legs so tightly that I can no longer feel them. Sometimes it mischievously covers one of my eyes with a hazy cloud or snatches words from the tip of my tongue. But even when it is not active, it won’t allow me to deny its existence.

It certainly hasn’t been as I thought it would be eight years ago, when I heard the words “I’m sorry but you have multiple sclerosis” come from the neurologist’s mouth. It was all surprisingly banal. There was no string section playing in the background, and I didn’t collapse in a heap and devote the rest of my life to charity work. I just shed a few tears and fell back on the old familiar comforts of a cigarette and a stiff drink.

All I knew of MS was what I’d read or seen on campaign posters or television programmes, so I expected to become quickly and progressively disabled and to require a wheelchair. The good news is that hasn’t happened. The bad news is that it still might, one day — in a month, or a year, or in two decades. What I didn’t anticipate was that, irrespective of the severity of my symptoms, the diagnosis of my condition would change my identity, the way I see myself and how other people see me.

Each of the 85,000 people in the UK with MS has their own, individual stalker. Some of us are crippled or blinded by the condition, or unable to swallow or speak. Some of us use walking sticks or wheelchairs and have specially adapted cars and disabled parking badges. But the lucky ones, like me, are to all intents and purposes able-bodied and fully-functioning. We work, we shop, we travel. Our symptoms are invisible.

Most people who have been told that they have an incurable condition like MS have one of two reactions: they either go into a state of denial, or are consumed by the news. I had the second reaction. For months I lived and breathed MS, researching it, writing about it and seeking out other sufferers. I also lived each day as if it were my last. I decided; the illness that would do for me, in the end. I therefore reasoned that I didn’t have to worry about cancer or heart disease or avian flu epidemics.

The problem with this approach is that it is exhausting, not to mention expensive. It is also irrational. Most people with MS, I discovered, live a normal lifespan, falling prey to exactly the same bugs and tumours as everyone else. It’s not fair but having MS offers no protection. In fact, I realised that if I could be struck down with something that affects just 1 person in 1,000, what hope had I of avoiding my one-in-four chance of developing cancer? I’m no betting woman, and I know statistics are little better than damned lies, but it doesn’t fill me with confidence. Now I’m sure that I’ll get everything.

Just as someone with anorexia sees a fat person when they look into the mirror, so I see a healthy one. My self-image has never quite caught up with the knowledge of my condition. I have mild MS symptoms — fatigue, tingling, blurred vision, a thumb that sometimes shoots out of its own accord — but nothing that has stopped me, now aged 34, from living a normal life. Yet I find it nigh impossible to get insurance or to pass a medical. So who am I, a sick person or a well person? Disabled or able-bodied? The truth is, I don’t know. And neither, it appears, does anyone else.

Let me give you some examples. Recently I went to see a (now ex) GP. After scrutinising my notes he looked me up and down and announced: “I see you’re still walking. Are you sure you were diagnosed correctly?” Some weeks later, I had an appointment with my neurologist. Far from congratulating me on my good health, he decided to set me straight. “You may think your MS is benign,” he said, “but our latest research shows that there is no such thing as benign MS. The disease is progressing within your brain and, over time, your condition will certainly deteriorate.”

It is no less confusing in the world at large. When I mix with the MS community, I feel like a fraud because I can walk unaided. My friends and family have stopped asking how I am all the time. But they sometimes seem surprised, even resentful, when I have symptoms and have to cancel engagements or leave an event early. It’s as if they have forgotten that I have MS because they can’t see it. It was yesterday’s news. I’ve also noticed that as I’ve grown older, attitudes have become less sympathetic. In our twenties, when nobody was aware of their mortality, my diagnosis came as a huge, scary shock. Now, in our thirties, people say things like “everyone gets something”.

MS has had to become another facet of my persona, like having curly hair or being a writer. I’m not sure how I’d feel if a cure were found tomorrow. I’d take it, certainly, but it would have devastating consequences: my identity would be destroyed all over again. I don’t want sympathy or praise; I’m neither brave nor exceptional. There are probably thousands of people like me out there. I’ve got one foot firmly on the pavement, the other in a wheelchair. Is it any wonder that I fall flat on my face sometimes?

Disabling factors

Multiple sclerosis is the most common disabling disease of the central nervous system in young adults. It results from damage to myelin, a white fatty substance that forms a protective sheath around nerve fibres in the brain and spinal cord and acts as an insulator to ensure that nerves transmit electrical impulses efficiently.

• Diagnosis is generally at between 20 and 40 years of age. It is rarely diagnosed in people under 12 or over 55.
  
  
• Two women have MS for every one man, and MS is more common in countries further from the Equator.
  
  
• It is not directly hereditary, but genetic susceptibility is a factor.
  
  
• There is no cure, but there are drugs that can modify its course for some people, and many symptoms can be successfully treated or managed.
  
  
• For more information, call the free MS Society Helpline on 0808 8008000, or log on to www.mssociety.org.uk
  
  
• The MS Trust has released this week a DVD, MS Together, for people whose MS has been newly diagnosed. It costs £7.50 plus p&p, and is available directly from the MS Trust via www.mstrust.org.uk, or 01462 476700