"I didn’t want people to see me as diminished"
Stewart, who’s 77, lives in Somerset with his wife Liz and keeps bees in his spare time. This MS Awareness Week, he opens up about his MS and encourages others to do the same.
I was diagnosed with MS 15 years ago at the age of 62, which is pretty late in life. After tripping when walking and getting numbness in my hands, I saw my GP. He referred me to a hospital where I had MRI scans which showed lesions on my spinal cord. I felt a bit shell-shocked at my diagnosis, although my sister had MS as well, so it was in the family.
When you have MS, you may not just be carrying the MS, you may have other baggage. Most people do, especially when they get to my age. The one major issue in my life is that my only daughter Rebecca, Bec, was killed in a car accident when she was 18. That’s something that I carry all the time, as well as the MS.
At first I was reluctant to talk to other people about MS
I don’t think I told anyone except my wife Liz and maybe a few close friends. The symptoms weren’t too bad, my limp wasn’t particularly pronounced and I could get around without a stick quite easily. I did suffer a bit of fatigue. People picked up on the limp occasionally and I put it down to a ‘designer limp’, jokingly.
I didn’t use a stick for another reason: pride. I didn’t want people to see me as diminished, devalued and less that than the Stewart Gould I used to be. I still wanted to be *that* Stewart Gould. Somehow I felt that I couldn’t tell people, rightly or wrongly I don’t know.
These days people know for sure about my MS, because it’s extremely obvious. It’s a bit embarrassing when people help me put my coat on…I sort of play to that and say ‘thank you for helping old people, you’re very good to us.’ I just make a joke of it really, make light of it. Because I can’t think of any other way of dealing with it.
Not talking about constipation at the pub
My walking is quite severely affected, I can’t walk without a stick, I have numbness in my hands on occasion. Urinary incontinence is not a problem, but urinary urgency is. Constipation is a problem. And my lower intestine (posh word for bowel) tends to control quite a few things I do. Bowel problems are central to my life.
I don’t think it’s a topic for general conversation - I don’t go to the pub and talk about constipation. I can’t remember having a conversation about constipation with anyone other than my wife and medical professionals.
I find talking to medical professionals relatively easy, but that may not be the case for everybody. For me there’s something remote about medical professionals – you can distance them from the rest of your life.
When you’re younger it can be harder to talk about embarrassing subjects like bowel and bladder problems. And then there’s things like erectile dysfunction, which can be extremely embarrassing and hard to deal with for young men.
But I would say if you’re in that position, seek professional help from medical professionals and talk about it. There are ways around things like erectile dysfunction these days. When I was young, there weren’t, but now there are medications which can help.
Opening up can help you feel better
Somebody asked me why I’m prepared to talk about these things. I think really it’s cathartic for me, it’s getting it off my chest.
If you have MS, I believe opening up and talking to other people will honestly make you feel better about the condition and yourself.
It really will help to talk.
