"MS is a misunderstood condition"
MS Awareness Week 2026 takes place between 20 and 26 April.
According to a new survey, over two thirds (67%) of people with MS in Scotland said they felt judged or treated differently for having MS.
Of those, nearly two in three (64%) said this had affected their confidence or self-esteem.
In her blog, Michelle talks about learning to accept using mobility aids. And what people still get wrong about MS.
“I think I’ve got M&S!”
I was experiencing symptoms for a few years before I was officially diagnosed.
One day, I woke up, and I was completely blind in one eye. I went to the doctor and had test after test. Then hospital appointment after hospital appointment. I was told I had Clinically Isolated Syndrome (CIS): I could develop MS in the future, or I might not. So I just ignored it for a few years, and went on to have my third child.
I had been clumsy for a while, which I didn’t pay much attention to. It was easy to write off falling over, or tripping over when I was out with the pram, as run-of-the-mill clumsiness. But then, in 2014, I had another issue with my eye.
I didn’t go totally blind this time. It was just like I had been looking at a bright light, and it wouldn’t go away. So I went to my doctor. And I said: “I think I’ve got M&S!”
The doctor managed to push through laughing to refer me for more tests. That’s when I had an MRI and was diagnosed - with MS, not a supermarket chain!
I was 31 at the time and thought I’d just carry on as normal. I wasn’t expecting anything about my life to change. But two months later, I woke up and couldn’t put any weight on my right side.
I was limping around and using my youngest’s buggy to hold myself up. It was scary. My doctor put me back in touch with the MS team, and they told me I was experiencing a massive relapse. I’ve never quite recovered from it.
Learning to use mobility aids
From then on, I started using more mobility aids, because my balance was so poor. I tried crutches for a while, but was too unsteady on them. Then they gave me a walking frame, then a manual wheelchair.
My partner would push me in it, because I lacked the arm strength. But it was difficult having him being in control – often he would push me past things I was still looking at! So I decided to get myself a power chair. And I can move myself around more. I’m in control of where I’m going and when I stop.
At first, I was quite reluctant to use mobility aids. I was self-conscious and a bit in denial. But when the kids were younger, we went on a day trip to a safari park. I was being stubborn and took crutches with me, even though the physio had given me the wheelchair. I struggled the whole day, and we missed out on a lot because I was in pain and kept needing to sit down.
I realised that if we had just taken the wheelchair, we could have just enjoyed the day. It was there to help me, not hinder me.
Invisible symptoms
Even though I use mobility aids, a lot of my symptoms are invisible. I feel like I look quite “normal”. When I go out with my hair done and maybe some makeup on, people will comment on it and tell me I look well. I just say thank you, because I don’t want to have to explain that I still live with nerve pain and spasticity.
My main symptom is fatigue. I find it hard to tell people about it beyond my immediate family, unless they also live with MS. It feels good to be able to talk about it at my local MS support group, and of course with my neurologist and MS nurse. But it’s a daily struggle. Just after lunchtime, I often have to go and lie down – everyone in the house knows that it’s time for my nap then. And even with the nap, the fatigue will often still come over me all of a sudden in the early evening. And I’ll just need to go and lie down. I feel heavy, and I can feel it in my eyes.
I worry that people who don’t know me think that I’m lazy, because I didn’t go back to work after I had my youngest. I was struggling with my walking, my mobility, and fatigue. People don’t see the daily management of fatigue. I do fear that they judge me, because they don’t understand the invisible symptoms.
I definitely think that MS is a misunderstood condition. People can see that I’m in a wheelchair. They see that I can’t walk. But they can’t see the fatigue, and I don’t think they understand it. If people see me out and about, they don’t know that I’m only able to be there because I’ve had my nap and have managed my energy.
MS doesn’t always look the way that people expect.
