You’ve Got to Hide Your MS Away

In honor of MS Awareness Week, observed in the U.K. April 19–25, the MS Society released results of a survey about the barriers that keep multiple sclerosis patients from sharing their health status.

Multiple Sclerosis News Today‘s Mary Chapman reported that a whacking one-third have stayed silent about their diagnosis. Of those who hid their condition, 9% kept it a secret from their partner or spouse.

How you keep MS a secret from your partner is gobsmacking, as the one thing many of us lose first is our stealth. Sure, James Bond might manage for a bit. Maybe it’s easier if you have benign MS. For the rest of us, not so much.

My MS has been like an avalanche — small, even harmless at the beginning, before becoming a rolling mist that destroys chalets with ease. (Or, in my case, mostly IKEA furniture!)

I try not to indulge in it taking over my life, even though it’s now reached the engulfing stage. So, I fight back and try to do things for myself. This usually engenders shout-swearing and enough racket to wake vampires in daylight. My family admonishes me, then helps me, then admonishes me again. Library silence ensues until the next time I drop a book.

I recently sat down to think about my own history. Not much of a concession, as I’ve been sitting down for the last two years. All right, I mulled, then did a bit of detective work into my own working life.

In 2006, I first experienced sclerosis. At that point, it was still possible that it was a one-off. The biggest problem was that it manifested itself by making me clatter to the ground while playing tennis. I ruptured my right shoulder so badly that it took two operations for the incessant, often screaming pain to stop. The sclerosis (and later, MS) was the least of my worries.

There was no chance of hiding all this from my partner, Jane. Good thing, too — I had no idea that I’d have to rely on her in the future as my carer. Eventually, nearly all household duties fell on her sensuous shoulders. She’d always been head of the household, and in the end, she’s had to deal with the lot.

In those days, Jane and I were working together as casting directors (CDs) and had our own company. The majority of people in television were freelancers by that time. No matter how successful one became, a cold fear still persisted that the phone would stop ringing. At one point, we were working on five productions simultaneously. To survive, I put crib sheets of each one’s major personnel on the filing cabinet beside me.

After a struggle, I was finally diagnosed with MS in 2009. Now, I realize I kept “freelance quiet” about having MS. I continued working on the BBC One sitcom “My Family” until its run ended in 2011. It was one of the longest running sitcoms in BBC history. We racked up well over 100 episodes, despite not working on the first two seasons.

My wife and I joked that the show had built our kitchen. When the producer dropped by for a meeting, we chose to have it in there. He was very complimentary. “Well, it is the kitchen that ‘My Family’ built for my family,” I immediately quipped. A lifetime involved in stand-up comedy has had severe effects on my soul.

The kitchen that the TV series “My Family” built for my family. (Photos by John Connor)

Once, we were walking from the Tube to the production company’s swanky central London office in an even swankier Georgian house. It was a bit of a hike. For some reason, I was wearing a suit, which is most unlike me. Maybe we were meeting some bigwigs? I fell on the way there, and was more upset that I’d torn the trousers of my designer suit.

At casting sessions in the basement of that house, Jane used to go up the stairs to meet the actors. As the junior CD, this used to be my job. As a courtesy, we’d all stand to shake the actors’ hands. By the end, I couldn’t. I was preserving myself for tackling those stairs myself.

If the show had gone on any longer, I would have had to fess up. Still, by this time, a wave of disability rights had begun to sweep through the industry. All casting sessions today have to be accessible!

I was once admonished by a writer-director for casting a blind man in a blind man’s part.

I nodded sheepishly, looked down humbly, and smirked like hell.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.