“I was worried that if I told my employer they would put me off sick,” East Lothian MS sufferer's story

Musselburgh father Iain Clark, 60, talks about his multiple sclerosis to highlight MS Awareness Week

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.

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 secondary progressive multiple sclerosis 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.

Iain Clark from Musselburgh tells how he kept his "frightening" multiple sclerosis symptoms secret at work.

I told my current employer, the Scottish Parliament, where I’m an intranet manager, 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

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’s 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.

Find out more about MS Awareness week here