Selma Blair and I have a lot in common — apart from the fact that she’s a famous Hollywood actress, and I’m, well, not. We are the same age, we are both Jewish and, rather unfortunately, it turns out that we both have the same incurable illness, the neurological condition Multiple Sclerosis (MS).
When I heard the news of Selma’s diagnosis last weekend, I knew exactly how she must be feeling. It’s a tangled mix of emotions: the solace of finally knowing what is wrong, after years of unexplained symptoms; the sheer relief that it isn’t a brain tumour which might kill you quickly; the reassurance that you aren’t going mad or just being a drama queen. Combined with this are overwhelming shock and devastation and a dread fear of the unknown, of what pain and disability the disease might bring.
I was only 25 when I was diagnosed, 21 years ago. It seems like a lifetime away and in many ways it is, but it also feels like yesterday. Being told the news that you have an incurable disease — in my case, by a rather unsympathetic doctor with the bedside manner of Mr Bean — is not an event you ever forget.
The moment seems frozen in time, neatly dividing my life into pre and post diagnosis segments. It changed both my self-identity and the way others perceived me forever. I stopped being a ‘well’ person, without care or responsibility and suddenly became someone whose future looked uncertain and bleak. To others, I became a worry, a victim, a potential burden or a liability.
Like many people newly-diagnosed with MS, I didn’t know much about the disease. Having read about the cellist Jacqueline du Pré, I was only familiar with the worst case scenario, which meant becoming rapidly disabled and confined to a wheelchair, blind, doubly incontinent and unable to swallow, with death following shortly after. I didn’t know that it was possible to live a fulfilling life with MS. I certainly didn’t anticipate that over two decades later I would still be mobile and active.
I wish someone had told me that MS is a very individual disease, affecting every person differently, and that a small but significant minority can remain fit and healthy for many decades, without significant disability. I hope someone has told Blair this.
Contrary to popular belief, MS is neither rare nor something that afflicts elderly people. Neither is it — a common mistake — what Steven Hawking had; that’s motor neurone disease. MS is actually the most common neurological condition affecting young adults (most are diagnosed in our 20s and 30s), with a prevalence of around one in 600 people in the UK. Striking up to three times as many women as men, it causes many different symptoms including pain, fatigue, vision problems and mobility problems, and occurs when the coating protecting your nerves (called myelin) is attacked and destroyed by your immune system.
Blair says she has had symptoms for at least 15 years, which were never taken seriously, and were dismissed as a pinched nerve. Pre diagnosis, I too had strange episodes— pins and needles, foggy thinking, extreme tiredness — which I put down to youthful excess. But I was lucky that my first obvious symptoms were a textbook MS presentation: optic neuritis (blurred, painful vision due to an inflamed optic nerve) and then an “attack” leaving me with numb legs which felt as if they were encased in a plaster cast and wouldn’t support me, so I kept falling down like a rag doll. Outwardly, I didn’t look sick, so when I collapsed at a train station at 5pm and lay spreadeagled on the platform unable to get up again, people stepped over me, tutting, thinking I was drunk.
MS is invisible and insidious. Most people aren’t aware that I have it, unless I choose to tell them. Even my friends and family forget sometimes. But I can no longer remember what it’s like not to live with it, to exist without the niggling fear that my body could let betray me tomorrow or next year, that a sudden onset of tightness in my legs might progress to permanent paralysis, or that the blurred vision I experience when I have a fever or am very tired might not rectify itself next time.
Two decades on, I’m incredibly lucky that my symptoms are still intermittent, mild and sensory — I experience tingling, pins and needles, patches of numbness, fatigue. They sneak up on me when there are extremes of temperature, particularly in hot, humid weather, or when I have been overdoing it. I’ve had to learn to pace myself, to say no occasionally to work or social arrangements, to eat healthily and sensibly. On the plus side, knowing I had the ticking time bomb of MS inside me made me vow to stop procrastinating, to seize opportunities. That’s good advice for anyone with the condition, I think.
I’ve never thought twice about talking about my MS, partly because I find it cathartic and partly because I wanted to use my skills and knowledge to help others by publicising the condition. But many people don’t tell, fearing it will affect their employment status, or that others will shun them. Some are scared to upset their loved ones. Blair is brave to go public and by doing so she will help raise the profile of MS.
There are many more drugs available now than when I was first diagnosed and developments in research mean that a cure is closer. MS is not a death sentence for most, even though living with it can be a terrible struggle. My neurologist doesn’t know why I’ve remained so well— his advice is just to keep on doing whatever it is I’m doing. Coping with MS is not about ‘fighting’, or ‘winning a war’, it’s about learning to live with it as best you can.
MS Society Helpline: 0808 800 8000
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