Jess O’Hare had been experiencing “random” symptoms for four years
Jess O’Hare had been experiencing “random” symptoms for four years
Most people in the UK have heard of multiple sclerosis – but for many, this is about as far as their understanding of the life-long nerve condition goes.
A new survey from the MS Society shows 89% of people have heard of MS. Of these, 82% know the condition is life-long, and 78% know it affects nerves in the brain and spine.
But only one in five UK adults know MS is most likely to be diagnosed in people in their 30s and 40s. Only 36% know women are more likely to be diagnosed with MS than men, and 30% know that smoking, obesity and lack of sunlight can increase a person’s risk of developing the condition.
This means the majority of people diagnosed with MS each year have no idea about what could be causing their debilitating symptoms.
This included 43-year-old Jess O’Hare, from Mossley Hill. When she was struck down with debilitating bouts of fatigue in 2014, she had no idea she was suffering from a progressive nerve disease, and thought she was simply overreacting.
She said: “It was just debilitating and it would last weeks. I went to the GP and said I’m having these episodes where I can’t do anything. I was doing the bare minimum, putting food on the table, but I wasn’t keeping up with anything else.
“At that point my GP thought I was a mum with two young kids, it’s normal to be tired. I don’t think they really understood, and I don’t know if I made it clear just how debilitating it was.
“I started getting episodes where I would go numb. It started in my little finger and then it slowly spread right up my arm. I thought I’d had a stroke, so I went to the walk-in at A&E.
“By that point, because I’d been to the doctors so much, I was feeling like a hypochondriac, because the symptoms were really random. I was having headaches, there were periods where I couldn’t sleep, and none of them seemed to be connected in my mind.”
The mum-of-two continued to suffer from MS for a further four years before she was finally diagnosed, after a lumbar puncture procedure revealed lesions in her spine in December 2018.
She said: “When I got the letter of the positive lumbar puncture, I immediately Googled it and that was when I found it could possibly be MS. I thought that was the worst case scenario, and I was too young. I was 33 or 34 at the time, and I thought it wasn’t possible.
“When I was told that’s what it was, I was shaken. It was a complete shock. I didn’t really know anything about it. I’d heard the term MS before, but I didn’t know what it actually was.
“I had no idea I was the average age for diagnosis. I thought progressive conditions were things old people get – you think of Parkinson’s, Alzheimer’s, things like that. So I immediately dismissed it on that account. I thought there was no way.
“It took a lot to come to terms with because when I got the diagnosis I was in such a bad place with my health. When they said it’s progressive, I thought if I’m like this now, what is it going to be like when I’m 40 or 50? Am I going to make it? Is it going to shorten my life?”
It is estimated over 150,000 people live with MS in the UK, with 135 diagnosed each week. The condition affects the brain and spinal cord and impacts how people move, think and feel. Symptoms are different for everyone and often invisible and include pain, mobility issues and fatigue.
Around one in every 400 people in the UK has MS, meaning the condition is far from rare. But many people, like Jess, continue to suffer in silence due to widespread misunderstandings.
She said: “Being diagnosed has made such a massive difference in my life, knowing and not worrying about these symptoms. I can manage things now. I’m now on medication to reduce relapses, and I haven’t had a relapse since last year.
“It’s a massive weight off your shoulders. When you have a condition like this it hangs over you, it impacts every little thing in your life and you don’t realise how much it does until you’re on the medication.
“I would like people to be more educated about what MS is. The biggest barrier for myself was largely that it’s not something you can see. Most of my symptoms are invisible so it can be really hard when people don’t understand the impact that it has.
“Some of the symptoms like the brain fog where your whole thought process slows down and it feels like your wading through concrete in your own brain.
“I really do regret not going back to the doctors earlier. It was because I felt like a hypochondriac. But at the end of the day your health is the most important thing. If you’re not feeling right, if you’re experiencing symptoms, even if it doesn’t turn out to be MS, you’re not wasting anybody’s time by going to the doctors. That’s what our NHS is here for.”
Sarah Rawlings, Executive Director of Research and External Affairs at the MS Society, said: “It’s great so many people in the UK have heard of multiple sclerosis, but these new findings show we have lots of work to do to increase understanding around the condition affecting younger people.
“MS can be debilitating, exhausting and unpredictable and we know it often strikes at a time when people are making big life choices about careers, relationships and family. If there’s greater understanding of MS – that could make a huge difference, from taking the fear away from a diagnosis, to making conversations with family, friends and employers that little bit easier.”
