Affecting an estimated 110,000 people in the UK, MS can impact everyone in a unique way. Here, two people share their experiences.
There are three main types of MS impacting people around the UK, but each type can affect everyone differently. Stewart is 75 and lives with progressive MS while Bayan is 26 and lives with relapsing remitting MS, but the two have had extremely different experiences in their diagnosis, symptoms and treatment.
Stewart, 75, progressive MS
Stewart received his MS diagnosis over a decade ago when he was 61-years-old, but before this he already had base knowledge of the condition due to his sister previously being diagnosed.
“Initially it didn’t really impact on my daily life too much except I couldn’t walk any long distance, then slowly over the years the distance that I can walk has decreased quite dramatically,” reveals Stewart. “I also developed rheumatoid arthritis about the same time which has complicated matters considerably.”
Stewart, who ran a woodworking business, continued working for nearly two years after his diagnosis before retiring early when he was unable to continue with physical work. His condition has progressed since, but he hasn’t let it stop him pursuing his hobbies.
“I’m a beekeeper and as my problems got worse lifting things and my mobility are a problem, but it doesn’t mean you can’t do things,” explains Stewart. “I’m active there in the admin work, I do what I can physically and I am teaching beekeeping.”
Stewart is the chairman of the Somerset Beekeepers, one of the largest associations in the UK, and would encourage people who recently received a diagnosis to find new ways to do the things they love.
“If you’ve got physical disabilities it will stop you doing certain things, but there’s still a lot of things you can do.”
“A diagnosis doesn’t have to mean you need to stop in your tracks, you’re not going to be able to do as much as you used to but you can still do an awful lot,” offers Stewart. “If you’ve got physical disabilities it will stop you doing certain things, but there’s still a lot of things you can do.
“Don’t give up, it’s not the end of the line just because you have a diagnosis of MS, there are always alternative ways of pursuing those hobbies and pastimes.”
While he has lived with the condition for many years, Stewart isn’t on any treatment and feels there needs to be greater understanding of what MS really is.
“People just don’t realise this is a whole-body thing, it’s not just legs or arms, that’s just what people see,” explains Stewart. “This is the case but there’s also a lot of support out there from organisations like the MS Society if you go and look for it, but you do have to be proactive: it’s not going to come to you.”
Bayan, 26, relapsing remitting MS
Like Stewart, Bayan also experienced symptoms before his diagnosis, first noticing them when he visited an art gallery with a friend and his vision was affected. After having numbness in the left side of his body Bayan was advised to seek medical attention.
“They did a scan and initially they thought it was a stroke and thought they found a blood clot in my brain, but after more scans they realised it was a lesion,” remembers Bayan.
Bayan’s symptoms started in December 2019 with relapses happening in July 2020 and October 2020 before he finally received a diagnosis in November 2020. This timing meant that Bayan had to come to terms with his new condition while the coronavirus pandemic was at its peak.
“I had no idea about MS before so when I was diagnosed it was a scary time, especially knowing that I had this condition pre-diagnosis,” shares Bayan. “I think the pandemic added to those unknowns because if I caught coronavirus I didn’t know how it would affect me.
“I think just having the diagnosis officially confirmed helped quite a lot, I knew what I was dealing with and was able to look for potential solutions.”
Although he felt relieved at getting a firm diagnosis, Bayan also felt isolated.
“Once you find other people who are going through the same thing then you’re suddenly not dealing with it by yourself.”
“Initially I felt very alone but I think once you find other people who are going through the same thing then you’re suddenly not dealing with it by yourself,” shares Bayan. “I became part of this community of thousands of other people in the UK.”
Bayan developed a relationship with the MS Society, now sitting on the charity’s board of trustees, and is an active member of the young person’s support group MS Together.
“Previously having little understanding of the condition myself, I was quite keen to be as open as possible,” explains Bayan. “No two days are the same: sometimes you can be feeling great and enjoy yourself but other days you really wouldn’t be able to leave the house. When it comes to MS it doesn’t affect people equally, especially across different generations.”
“Being part of MS Together helped me to see that I could still have a life,” adds Bayan.
After his diagnosis, Bayan quickly started treatment but found that common medications weren’t helping him.
“Some people manage to kind of control their MS with disease modifying therapies but it wasn’t effective for me and so I was eligible for HSCT,” reveals Bayan.
HSCT is a treatment involving drugs commonly used in chemotherapy and a stem cell transplant in the hopes of improving patients’ symptoms.
“It has been a rollercoaster both physically and emotionally but it’s definitely been a positive experience for me, I’m so grateful to the team that worked on it,” expresses Bayan. “At the same time, I’m continually seeing that when it comes to treatments there’s regional inequalities. I have friends in Scotland who are approved for HSCT but they aren’t able to access it and I have found that incredibly upsetting.”
As he continues his work with the MS Society and MS Together, Bayan would like to see equal access to treatments across the UK.
Find support from the MS Society at www.mssociety.org.uk or by calling the charity’s free helpline on 0808 800 8000 from 9am to 7pm, Monday to Friday. Connect with MS Together on Instagram @mstogetherofficial