Musselburgh man Iain Clark opens up about his multiple sclerosis

When Iain Clark suddenly lost all feeling from the waist down, he worried about how it would impact his career in the police force.

So he decided to keep the frightening situation hidden from everyone he worked with.

But when he was finally diagnosed with multiple sclerosis (MS) more than a decade later, he felt a sense of relief upon telling his family, friends and colleagues.

Now Mr Clark, 60, a Deputy Lieutenant of East Lothian, turf cutter at the historic 2016 Riding of the Marches in Musselburgh and former chairperson of Musselburgh Area Partnership, is joining charities across the UK – including MS Society Scotland – to share his experiences as part of MS Awareness Week 2024.

The week sees the launch of MS Unfiltered, a sensitive and intimate campaign which will shine a light on the MS topics that can feel taboo or difficult to talk about.

In the lead up to MS Awareness Week, people affected by MS were invited to fill out a community survey about symptoms that might be considered sensitive or embarrassing.

More than 250 people in Scotland filled out the UK-wide survey and, like Mr Clark, more than half of those respondents (115 people, 54 per cent ) said they kept MS symptoms hidden from colleagues due to embarrassment.

Iain Clark with wife Debbie

Mr Clark, who now works as a Scottish Parliament intranet manager, said: "I gradually lost all feeling from the waist down over a couple of days. It was quite scary.

"It didn’t stop me doing anything – everything still functioned – I just couldn’t feel anything. You could have stuck a knife in my leg and I wouldn’t have felt it.

"I was worried that if I told my employer they would put me off sick. At any stage through this, if I’d gone off sick and just sat in the house, I might have buckled, because from a mental health point of view, I like to be active and busy.

"I also wanted to keep it to myself until I knew what was causing it. I didn’t want people asking me questions I couldn’t answer, and I didn’t want people to speculate about what could be wrong with me when even I didn’t know. I also didn’t want to worry family members and friends.

"So I made a conscious decision not to tell anyone apart from my wife.

"I suppose it was a bit difficult to keep it a secret because within myself I was a little bit anxious. But I just acted as normal. I went into work, did what I had to do, and got on with it. I don’t think anyone suspected."

After about six weeks, Mr Clark had got all the feeling back and was left with just some pins and needles between all of his toes, which he still experiences today.

Iain Clark on horseback during his police career

He was diagnosed with transverse myelitis, a rare neurological condition caused by inflammation of the spinal cord. Although doctors warned the married father of two it could flare up again, he remained almost symptom free – aside from struggling to stand up from a crouching position when looking after his horse, which a consultant attributed to muscular problems – for a further 14 years.

Then in 2020, during the Covid-19 lockdown, Mr Clark noticed that he was tripping more often while out walking. By the end of 2021 he had been diagnosed with Secondary Progressive MS (SPMS). He believes his earlier issues were MS relapses but he will never know for sure.

This time, when it came to telling people about his condition, he took an entirely different approach.

Mr Clark, whose symptoms now include fatigue, brain fog and slight bladder issues in addition to the mobility problems, said: "I didn’t want to tell people at first but, having chatted to my wife, we thought it might be better if people just knew.

"I was only ever a social drinker but, when I was suspected of having SPMS, I gave up alcohol.

"I thought if I just told people I had MS I wouldn’t have to answer questions every time someone realised I was in the pub without a pint, or not drinking at a family do. And if I’m having a tired day, or I’ve had a busy week, and I need to sit and recuperate for 20 minutes, or just not do anything for a day, people will know why and won’t wonder what’s wrong.

"I’m pleased I told my family and friends; it did take a wee bit of weight off my shoulders.

"I told my current employer as well and I can’t fault them, they’ve been very, very good, top notch."

Iain Clark and his dog Obi

When asked what advice he would give to people who were concerned about discussing their MS with others, Mr Clark added: "It’s very personal, deciding whether to tell people about your MS and when.

"Because I didn’t know what it was, I didn’t want to tell people ‘I think I’ve got this’ or ‘I think I’ve got that’. Once it was confirmed, that was the key for me.

"I would say it’s about maybe finding the person you trust most and you know will really understand, whether that’s your partner, an adult kid, or your doctor or consultant. If they know about your MS then they can help you out if you need it.

"If you can find an event, or a group, where you can meet with like-minded people who either have MS or are supporting somebody living with MS, that might help too."

He added: "I’m quite open about my MS now. Most people in my community know I’ve got it because I share information online and I’m happy to talk about it. I don’t shout about it from the rooftops but, if somebody asks about it, I’m open.”

Iain Clark and his dog Obi

Morna Simpkins, director of MS Society Scotland, said: "A heartbreaking 85 per cent of people who responded to our community survey in Scotland (213 people) revealed they felt embarrassed about at least one of their MS symptoms. And 43 per cent (108 people) told us they’d avoided seeking medical help for MS symptoms due to embarrassment.

"MS is a condition that affects the brain and spinal cord, and impacts how people move, think and feel. Symptoms are different for everyone and are often invisible."

Find out more about MS Awareness Week 2024 at mssociety.org.uk/get-involved/ms-awareness-week

The MS Helpline gives free emotional support and information to anyone living with MS. Call 0808 800 8000, email helpline@mssociety.org.uk or visit mssociety.org.uk/care-and-support/ms-helpline to find out more.