East Lothian dad hid 'terrifying' MS symptom for fear of losing his job

A dad from East Lothian kept his frightening symptoms hidden, in fear of losing his career in the police force.

Iain Clark, a father of two gradually lost all feeling from the waist down and chose not to tell anyone until he got a diagnosis over a decade later.

After he was told he had multiple sclerosis (MS), Iain, from Musselburgh, said that he felt a sense of immense relief after keeping the secret for so long.

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Speaking to the Record, the 60-year-old explained: “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.”

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After about six weeks, all Iain’s feeling was restored, leaving him with just pins and needles sensations between his toes, which he still experiences today.

He was diagnosed with transverse myelitis – a rare neurological condition caused by inflammation of the spinal cord.

Although doctors warned him that 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 – for a further 14 years.

Then in 2020, during the Covid-19 lockdown, Iain noticed he was tripping more often while out walking. By the end of 2021, Iain had been diagnosed with secondary progressive MS (SPMD).

Although he’ll never know for sure, he believes his earlier issues were MS relapses. This time, when it came to telling people about his condition, he took an entirely different approach.

Iain, whose symptoms now include fatigue, brain fog and slight bladder issues in addition to the mobility problems, continued: “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. They helped me move into a role that involved less travelling.

“I work from home most of the time but when I do go into the office, I get a parking space, because I might be able to walk to the office in the morning but if my legs are tired at the end of the day I might not be able to walk back.

“They did occupational health, the whole works, whatever I needed and any adjustments. I’m encouraged to take breaks from the screen and stretch my legs. They’re very accommodating.”

More than 15,000 people in Scotland, and more than 130,000 people in the whole of the UK, live with MS.

Each week in Scotland, 14 people are diagnosed with MS. Throughout the UK, it’s 130.

For the second consecutive year, the MS Society, of which MS Society Scotland is a part, has teamed up with MS Together, the MS Trust, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS for MS Awareness Week.

In the approach to the current MS Awareness Week, which runs until Sunday, people affected by MS were invited to complete 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 Iain, more than half of those respondents (115 people; 54 per cent) said they keep MS symptoms hidden from colleagues due to embarrassment.

The week provides a safe space for people to talk honestly and openly about everything from bladder control and sexual dysfunction to navigating menopause and cultural stigma.

As well as sharing people’s unfiltered stories, the seven charities will also provide support and resources for everyone affected by the topics.

The aim of MS Unfiltered is to raise awareness of the huge range of symptoms and daily challenges people with MS can face, while simultaneously encouraging people to speak out together and seek support.

Over half of the survey respondents from Scotland (58 per cent; 112 people) said that seeing more representation of people living with these types of symptoms would give them the confidence to talk about the symptoms they consider to be embarrassing.

When asked what advice he would give to people who are concerned about discussing their MS with others, Iain, now a Scottish Parliament intranet manager, 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. You can find out how they dealt with speaking about it. It might give you the confidence to explain your MS to people. And I think it makes it a bit easier to know there are a lot more people out there with MS than just you. But everybody’s different.

“I’ve never had a problem speaking to medical professionals. I suppose I wanted to make sure I told them about all the symptoms I was experiencing so they could come to the right conclusion and tell me the diagnosis.

“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.”

Fifty per cent of Scotland’s respondents (127 people) said they had been embarrassed by issues linked to their walking.

Sixty-one per cent (129 people) said they hadn’t told family members about some of their symptoms due to embarrassment, while 67 per cent (142 people) had kept ‘embarrassing’ symptoms hidden from friends.