‘This is what MS looks like’

Not being gay, I presumed I’d never have a “coming out” experience. How wrong I was. On being diagnosed with relapsing/remitting MS in February, I discovered a coming-out process is included in the package. My symptoms remain mostly invisible to others: pins and needles in the hands, blurred vision, fatigue, muscle weakness and imbalance (I often give a brilliant impression of being drunk when I am not). Prior to being diagnosed the symptoms seemed so negligible, I was convinced I was a raving hypochondriac.

With relapsing/remitting MS, symptoms come and go, so if your disease is slow to progress, with infrequent relapses and low levels of disability, you can remain silent for years, even decades. I have not “come out of the closet” with many people. Until now.

After diagnosis I was advised by medical professionals not to rush into telling people about my condition. There is no legal obligation and they have seen many go through difficult situations in the workplace. And it can be challenging to deal with others’ negative reactions and emotions when you are still grappling with yours. I was also told many people in the public eye with MS are not open about it. I was dumbstruck; how are perceptions of the disease to change if well-known figures living with it remain “closeted” and regular folk keep schtum too?

Part of the problem is that the most famous MS sufferer in the UK remains Jacqueline du Pré. Her case was tragic, because as a cellist her career would have been damaged by the mildest symptoms of the disease, let alone the aggressive form that killed her. But for every du Pré there are thousands living and working with MS, carrying on their lives with some modifications.

Recently, at an enlightening MS day run by my hospital for newly diagnosed patients, a consultant showed a slide with images of prominent people associated with MS. Though well-intentioned, I found it a meagre and depressing assortment of people. My spirits rose when for a moment I thought JK Rowling had created seven best-selling instalments of Harry Potter despite sharing my debilitating neurological condition. It transpires not; her mother died of the disease. The slide also featured an Osmond brother, “the boring one”, as someone put it. The only other “famous” people mustered were a rugby player I had never heard of and, of course, Jackie du Pré. The slide suggested to me that those with MS, and most people with disabilities, live in the shadows. I am desperate to see someone in the limelight, doing their thing the best they can, despite their disability.

One person who has managed this with MS is someone whose work I have always admired. American writer Joan Didion wrote briefly about her diagnosis in an appraisal of the chaotic close of the 1960s, The White Album. She nails the feeling of being diagnosed in two paragraphs: “I had … a sharp apprehension of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” Despite these arresting passages Didion has remained silent on the disease since. For me, discovering Didion has MS was like being a football fan and finding David Beckham has the condition and is still kicking a ball around for AC Milan. OK, Didion is a fairly reclusive writer, career manageable with a remitting disease, and has a very benign form of MS (she is still walking, talking and working as an advanced septuagenarian). But suddenly I felt I could hope again, not just to be an old lady, but to have a long, successful career.

For those of us with the condition, the scarcity of people with MS who are “out of the closet” means it is difficult to imagine an active future life. As if to affirm this, a taxi driver told me, unprovoked by any confession of MS on my part, that his friend with the disease had moved out of London and, due to “shame” about her disability, refused to see anyone. Forget living in the shadows with the disease; being without your friends when you need their support most must be like living in the dark.

Another problem with the lack of “out” role models is that it does nothing to counter the widespread misconception that the disease is swiftly incapacitating, leading to premature death. In the US drama series The West Wing, President Bartlet’s failure to “come out” with MS during his first presidential campaign is a major storyline. When his staffers are preparing to disclose his disease, a poll reveals 74 per cent of the public believe MS is fatal. I think the scriptwriters did their homework on that figure. Such misperceptions make a pretty good reason to be tight-lipped – anticipated death is not so hot for your career. Fear of the disease eclipsing their professional reputations and making it difficult to be promoted or recruited, makes people hide their MS for as long as possible. This often then forces people to come out when their condition is rapidly deteriorating, reinforcing negative misconceptions about MS’s aggression. Yet even if employers do have a reasonable understanding of MS they might shy away from a candidate who needs modifications to be made to the workplace, time off sick due to relapses or treatment, and whose fatigue may force them to eventually work part-time.

However, it is illegal for employers to discriminate in this way. I hope that soon more people with MS might be encouraged to seek the protection, resources and human compassion that also come with disclosure. Legal security comes in the form of the Equality Act 2010 (previously the Disability Discrimination Act). The act promotes the rights of those with disabilities, guarding against discrimination during recruitment and ensuring employers make reasonable adjustments to enable disabled people to keep working.

So after my diagnosis, a period on sick leave and a very useful discussion with an advisor on the Equality and Human Rights Commission helpline, I decided to tell my managers and HR team about my MS. A hefty part of the “coming out” process, it was a great experience. I felt in control of the disclosure, supported by my colleagues, and the resources I needed to still do my job effectively were provided with help from the Access to Work scheme.

But this article is a leap of faith. Prior to publication I faced a dilemma: should I publish this under a pen name, heeding the advice of many and defending myself against discrimination lurking in murky places that the Equality Act 2010 can’t oversee; or should I well and truly “come out”, publish and be, potentially, damned? The danger is in losing control of who knows and who doesn’t. In an age of instantaneous information, it would be common for potential employers, even potential boyfriends, to drop my name into Google and find this article. I fear the knowledge of my MS would overpower their perception of me and colour their decision of whether to get to know me better.

After much deliberation (and even concocting some pseudonyms), I decided to publish this and my new blog under my real name. It would be the height of hypocrisy, not to mention cowardly, to publish this article while not disclosing my identity. I decided that “coming out” wholeheartedly would enable more people to learn that having MS was not the end of someone’s life. I decided to trust that I wouldn’t want to work in a place where there wasn’t an open-minded attitude to disability and wouldn’t date someone who would let my MS stop him from knowing me better. I decided it is better to trust than fear. So if you have just googled me and are reading this online, we can still get to know each other.

“Coming out” with MS can be a little bleak. Few trailblazing icons, no flags to wave, no badges to wear with pride. Despite the fact that it inevitably becomes part of your self-definition, there are no markers of a positive collective identity to adopt, few inspiring leaders to follow through difficult terrain. Maybe it’s time some of those in the public eye living with MS step out of the closet. But perhaps more importantly all patients with the condition should be encouraged to be open about their disease and receive the support they deserve. For, as I heard the London Gay Men’s Chorus emphatically sing last Saturday night: “Life’s not worth a damn ’til you can say, hey world, I am what I am.”

Cathy John’s blog can be found at www.lickingthehoney.org