You probably know someone with MS who is keeping it secret

This World Multiple Sclerosis (MS) Day, you may spare a thought for those affected by this chronic, debilitating disease. You may not realise, however, that there are people you meet every day with MS who are keeping it secret from you.

Early this year, Jamie-Lynn Sigler – who played the daughter of Tony Soprano in the TV show The Sopranos – revealed that she has the disease. The announcement came 15 years after her diagnosis. Like me, she’s been in the closet with MS.

MS is a neurological disease. There are different types and they affect people differently. Some cases of MS progress rapidly and the disability can lead to mobility issues, paralysis and severe nerve damage that can leave the sufferer wheelchair bound.

The relapsing-remitting version that I have is possible to keep hidden. You can’t see MS by looking at me. You would see I wear glasses – the black-rimmed professional kind. If you were discerning, you might see that my right eyelid is heavier than the left – that’s the result of optic neuritis that left me blind for two weeks in the late 1990s.

You would see a fit person, someone who bounds up the steps at Central Station in the morning. You won’t see the pins and needles running through my hands and tight tingling bands around my chest and thighs. You won’t see that I often feel like I’m wearing a corset plugged into something electrical. When I tip my head forward, you won’t see the jolt of electricity shoot down my neck and buzz in my fingers.

I‘ve had multiple sclerosis for 18 years. If you knew, you would be one of a select few to whom I have ‘come out’. It’s not that I don’t accept that I have MS, it’s just that I don’t define myself by it and I don’t want anyone else to either.

Multiple sclerosis is the most common chronic neurological disease in the world. According to MS Australia, it affects around 23,000 Australians and three times more women than men. The average age of onset is 30. The cause is unknown and there is no cure.

The experience is different for everyone. At times my skin feels as if it is healing from bad sunburn. I’ve had the feeling that my jeans are wet, but only on one side. Water droplets that shoot from the sides of a showerhead can feel like the sparks off a blowtorch, much like sciatica feels.

A few years ago I was introduced to a distant relative who had obviously been told of my condition. He looked at me with amazement and said, “You look so well, considering.” He then asked: “How long will it be till you’re in a wheelchair?”

Stigma and discrimination is the key reason people like me keep it quiet. Why wouldn’t you keep it secret when you get a whole collection of flawed worst-case perceptions transferred onto you?

Erika North, a well-known radio announcer in London, kept her MS secret even while talking about many personal stories on air.

“I felt like damaged goods,” she told the Daily Mail. “I was worried people would view me differently.”  I feel entirely the same way. I want people to think of me as creative, focused and hardworking. Not disease-ridden. Not infirm. Not someone sleepwalking into oblivion.

The online forum thisisms.com has comments from people who choose to keep it quiet for different reasons, often professional. “I decided early on that I would tell my family, but not my work,” wrote one forum participant. “I don’t want to complicate the workplace with this because biases in the world are very real.”

Probably one of the most common and difficult symptoms of multiple sclerosis is fatigue. Fatigue doesn’t just make you feel tired; it saps your confidence. In the last few years I have come to the conclusion that confidence and energy are closely linked. Without enough energy, it’s hard for your brain to fire, let alone your body. Without a brain firing at an optimal level, it’s hard to think quickly in a stressful meeting and keep a clear and steady voice.

Jamie-Lynn Sigler may have at last come out, but it wasn’t until after The Sopranos filmed its final season. I respect and understand that. World MS Day is a day to change perceptions. If you have MS, I hope you have a wonderful day. But I can’t say I’ll recognise you.

 

Originally published for DailyLife, 25 May 2016.