ALMOST two-thirds (63%) of people from Scotland who responded to a new survey by leading multiple sclerosis (MS) charities have experienced someone wrongly assuming they couldn’t do something because they live with MS.
To mark this year’s MS Awareness Week (20 to 26 April) campaign, MS Think Again, more than 1,600 people living with MS in the UK were asked about the misconceptions they face and the harmful impact these can have on their lives.
Of the 237 respondents from Scotland, a staggering 82% have been told they ‘don’t look sick’ or received similar comments. Of the 63% of survey respondents in Scotland who said someone had wrongly assumed they couldn’t do something because of their MS, almost half (45%) said at least one person thought they would be unable to exercise or play sports.
More than 17,000 people in Scotland, and over 150,000 people in the UK, live with MS. It’s a condition that affects nerves in the brain and spinal cord, impacting how people move, think, and feel. Symptoms are different for everyone, and are often invisible, with 98% of Scotland respondents saying they experience at least one invisible symptom, such as fatigue, cognitive issues, or pain. More than half (51%) of those respondents have been made to feel their invisible symptoms don’t matter, while more than one in 10 (16%) have been accused of faking invisible symptoms.
Sixty-year-old Hazel Kirkland, from Ayr, knows how it feels to be on the receiving end of false assumptions. The mother of two hasn’t let her MS diagnosis stop her from enjoying exercise, and this year she competed in her first HYROX race – an event that combines running with different workouts. Many of Hazel’s symptoms are invisible, including pain and fatigue, and she’s been confronted by someone who doesn’t believe she can have MS if she’s able to stay so fit.
Hazel, who worked as a hairdresser and a gymnastics coach before stopping working due to her MS, said:
“Someone I know said to me: ‘There’s no way you have MS, look what you do.’
“It makes me frustrated because I know how bad my MS can get. My day is short. I get up at 8am, and I’m in bed by 8pm. If I want to go out for dinner with friends, I have to sleep in the afternoon, or I won’t have the energy. I can’t get into a bath if it’s full of water because I’ll lose my balance; I have to put a few inches of water in the bottom, get in and let it fill up around me. Before I knew I had MS, I was off work for nine months. I slept for about three months; I just couldn’t get off the couch.
“But people who make assumptions don’t ever see that. Sometimes I think, ‘you should bloody see me now if you think I don’t have MS.’, but really, I don’t want anyone to see me when I’m having a bad day. I don’t even let my children see me. I don’t want people to feel sorry for me.
“Not every day is a bad day. You have good days; you have bad days. Some days, I can go out and run without a problem. Other days, I can’t move off the couch. I’m lucky that I knit and crochet, so on days when I’m sitting there, I have things I can do. Sometimes I can follow a pattern, other days there’s no way my brain will follow it. So, I always have three or four projects, and I just pick up what I can do.”
Hazel was diagnosed with relapsing remitting MS (RRMS) seven years ago, more than three decades after first experiencing numbness in her face and tongue and frequent falls. She competed in this year’s HYROX Glasgow in a doubles team with her friend and gym buddy, Michelle Ward. The pair used the challenge as a fundraiser for the MS Society, raising an incredible £2,610 between them.
Hazel continued:
“My husband and I have always kept fit. My daughter runs a CrossFit gym, and a lot of my family are into it. One of the girls in the gym said HYROX was the next thing everyone was doing and suggested I do one. I said there was no way I could run an 8K anymore! But she said I could already run 1K, and I had about four months, which was loads of time, so if I broke it down into 1 Ks, I could learn to run again! So, that was it, I started training.
“It was tough, I’m not going to lie. I upped my nerve pain medication the week before and the week after, but I was still in agony; the pain in my legs has been unbelievable. When I started taking my meds down to where they should be, I was sore and really tired. And I had to do specially adapted versions of some of the exercises because I’ve got no balance and I can’t squat.
“The hardest bit was the amount of other people around me. When I was practising running with my husband, there was nobody there. I struggle with spatial awareness, and it was overwhelming having all those people around me, thinking I was going to bump into someone.
“I think some misconceptions happen because people just don’t know enough about MS. But some people don’t seem willing to see people for who they really are, to look at them as individuals.
“I’d like people to know that when you’re diagnosed with something like MS, life hasn’t finished for you, it’s just a different way of living now.”
This year’s MS Awareness Week campaign is being led by a collaboration of the UK’s biggest MS charities: MS Society, MS Together, MS Trust, MS-UK, Shift.ms, Overcoming MS, Neuro Therapy Network, and Talks with MS.
Jo Anderson, Director for Scotland at the MS Society, said:
“These findings are hard to read, but they’re a reminder to us all that incorrect assumptions can cause serious harm.
“MS affects nerves in the brain and spinal cord, impacting how people move, think, and feel. It’s different for everyone, but many people experience invisible symptoms such as pain, fatigue, difficulties with memory and concentration, bladder and bowel issues, and vision problems. While MS can sometimes be debilitating, many people live well with the condition, working, travelling, playing sports, or raising a family.
“As the survey results show, making false assumptions or judgements can lead to hurtful behaviour and real-life consequences, from being underestimated at work to being harassed for using an accessible parking space.
“We hope this campaign will persuade people to listen, learn, and really understand MS. We’d like to say a huge thank you to Hazel and everyone else who shared their experiences for MS Awareness Week.”
For more information about the campaign, search: #MSThinkAgain.
