A young woman with relapsing multiple sclerosis which has affected her memory and ability to walk has told how her devastating diagnosis has seen her grow apart from her mother.
Ellie Marsh, 22, from Castle Donnington, East Midlands, was told she has the lifelong condition in September 2018, after experiencing a year of symptoms ranging from tingling and numbness in her feet and a heavy-feeling in her legs that hindered her movement.
She admitted she struggled to come to terms with her diagnosis at first, in particular the impact it had on her family dynamic.
The medical sales rep said she now feels a lot of people, including her mother, see her with a ‘label on her head that says MS’.
Ellie Marsh, 22, from Castle Donnington, East Midlands, has relapsing multiple sclerosis which has affected her memory and ability to walk
Ellie told how her devastating diagnosis has seen her grow apart from her mother (pictured together) and other close family members
Ellie is sharing her heartbreaking story as new research by the MS Society shows one in five people diagnosed with the condition in the UK is now under the age of 30.
Speaking to FEMAIL, she explained: ‘The most difficult change for me has been the relationship with my very close family – like my mum, for example.
‘I feel like she now sees me – and a lot of people see me – like I’ve got a label on my head that says MS.
‘Conversation always starts with MS and I’d rather it didn’t – I’d rather not have to think about it every day, but you don’t really have a choice.
‘I kind of push my mum away now when she wants to talk about it, because it’s best to block it out.’
Ellie is sharing her story as new research by the MS Society shows one in five people diagnosed with the condition in the UK is now under the age of 30
Ellie added that she’s also battled with anxiety and depression – something she ‘never thought she’d be susceptible to’ as she’s always been a very ‘upbeat, laid back and happy’ person.
When she first visited her GP about her symptoms, Ellie told how the doctor suspected it was a trapped nerve but sent her to a neurologist for tests.
‘My legs became really heavy and that affected my walking. Then it spread up to my hands and arms,’ she recalled.
‘When I was actually diagnosed it was awful. I’d gone on my own because I thought it was just a follow-up appointment and told my mum and boyfriend Riley I didn’t need them there.
Pictured with her boyfriend Riley, Ellie admitted she’s battled with anxiety and depression since her diagnosis – something she ‘never thought she’d be susceptible to’ as she’s always been a very upbeat, laidback and happy person
‘The lady who diagnosed me didn’t know anything about MS either, so just said, “We’ve had a look at your MRI and you’ve got MS – but I don’t really know much about it so I’ve booked another appointment for you to talk to a specialist in eight weeks’ time”.
‘I said I couldn’t wait that long, I didn’t even know what it was. I was in pieces, I didn’t know what to do.
‘I asked if we could go that afternoon to get a bit more information, and saw a GP. But my GP just said, “It’s not the end of the world, you could get hit by a bus tomorrow”.’
Ellie told how she was confused and ‘in bits’, and phoned in her mother in floods of tears, fearing she only had a few months before she’d be wheelchair-bound. There are no other neurological conditions in her family.
Thankfully Riley, whom Ellie has been with for five years, has been a rock throughout her ordeal and ‘so supportive’
When she first visited her GP about her symptoms, Ellie told how the doctor suspected it was a trapped nerve but sent her to a neurologist for a series of tests which detected MS. Pictured during a skydive
She admitted her MS has since had an impact on her relationships, particularly those closest to her – her mother, grandmother, sister and aunt.
‘I don’t like to talk about it with them. I feel like if I say one thing that’s all they’ll ever focus on. So I really have pushed them away a little bit, because I don’t want them constantly checking in on me,’ she explained.
‘I know they just care about me but I’ve definitely pushed them away, so we’re not as close as we used to be.
‘We’re still close obviously, but when it comes to MS I push my mum away.’
Thankfully Riley, 23, whom she has been with for five years, has been a rock throughout her ordeal and ‘so supportive’ – but her girlfriends took the news hard.
Ellie says Riley is very laid back and just goes with the flow – adding: ‘We don’t really talk or think about [my MS], which is nice’
‘You hear stories all the time about people breaking up because they can’t handle a diagnosis like that, but there was none of that with us,’ she said.
‘Riley and I have just carried on as normal. He’s very laid back and just goes with the flow – we don’t really talk or think about it, which is nice.
‘It was a lot more emotional when I decided to tell my girlfriends – it was a little bit more dramatic! They were crying – we were all just crying.
‘They’ve been really supportive but it was difficult talking about it. And I’m not sure they fully understood. Me and my friends have a few more jokes about my balance and things like that now, but it’s not had any negative impact on friendships.
Ellie dreams of having a big family, with children and ‘lots of dogs’ – but worries she could be physically very disabled in a few years. She added: ‘If I couldn’t walk the dog, that would really impact me’
‘What it has done is given me a hell of a lot more friends who understand what I’m going through, specifically through MS Together – I now have so many friends who have MS, who understand everything I’m going through.’
Due to her MS, Ellie struggles with heavy legs and ‘drop foot’, which causes her to lose her balance and trip over.
‘Some days it’s worse than others,’ she said. ‘Some days it’s really hard to walk.
‘Fatigue is a big one, and then just general mental health problems that come with it that you don’t think about when you’re diagnosed.
‘I’ve felt quite down and anxious coming to terms with it. If I let it really get to me I could feel very depressed and severely isolated, but I try to roll with the punches and make sure I’ve got the necessary support around me.
Medical sales rep Ellie says she now feels a lot of people, including her mother, see her with a ‘label on her head that says MS’
‘My memory is awful, it’s so bad. And I get cognitive fog, where I struggle with getting words out sometimes and explaining things, so I can’t always string a sentence together, and I’ll forget whether I’ve just said something or not.
‘It affects my work life and my general life, and I can get quite frustrated with it. My balance is awful but that’s kind of a joke now – I’m just always falling over. And my co-ordination is s**** so I can’t dance, or catch a ball!’
Thankfully Ellie’s work has been supportive and have accommodated her hospital appointments. She is still able to drive, but worries that one day, if her MS begins to affect her ability to do so, she wouldn’t be able to do her job.
‘I go and train nurses on different dressings that we manufacture, and try to get them to buy them. It’s quite intense and fast-paced,’ she said.
Thankfully Ellie’s work has been supportive and have accommodated her hospital appointments. She is still able to drive, but worries that one day, if her MS begins to affect her ability to do so, she wouldn’t be able to do her job
‘I’d find not being able to do my job a really hard thing to come to terms with, as I’d have to look into starting a whole new career from scratch.’
Ellie worries about her condition progressing and getting worse – which it has done during the pandemic as it’s caused a delay to her starting a new treatment plan – and the impact this could have on her future.
‘Riley and I definitely want a family – babies and dogs – which we have discussed. We try not to think about MS affecting my abilities to be a parent, but it is definitely something I am worried about in the back of my mind,’ she explained.
What is multiple sclerosis (MS)?
MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
The immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body.
It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.
A study of the incidence of MS, developed in conjunction with Public Health England (PHE), estimates that 18% of total MS diagnoses in the UK are in people age 30 or under. This is compared to the previous estimate of only 12%.
There are 130,000 people living with MS in the UK and, in the last year alone, the charity estimates more than 1,250 people under 30 have been diagnosed. It is the most common progressive neurological condition in young people today.
When diagnosed with MS, no one can predict how the condition will affect you, how disabled you will become, or how quickly, and tens of thousands of people still have no treatment to help as their MS advances.
‘It partly makes me want to have a family younger than I would have done without the diagnosis, but I also don’t want to “give in” and wish away my twenties and live my life in a different way to what I would’ve done pre-diagnosis.
‘I do worry that I could be physically very disabled in a few years, or that I might not be able to look after my kids if I have kids.
‘There’s so much you take for granted. I definitely do think about the future and it’s scary, because MS is so unpredictable that you just don’t know what will happen to you.
‘One of my biggest fears is going blind – because I love drawing and art and illustration. It’s terrifying that my sight might be affected.
‘If there was a treatment that could stop that progression, it would change everything. If I’m honest, I’d probably have more goals and ambitions because I’d know they weren’t going to be affected at some point.’
The MS Society aims to make life better for people with MS, by campaigning, providing support and driving research into more – and better – treatments.
Its Stop MS Appeal needs to raise £100million to find treatments for everyone with MS. By 2025, the aim is to be in the final stages of testing a range of treatments to prevent disability progression.
Dr Emma Gray, assistant director of research at the MS Society, said: ‘There are now over a dozen licensed treatments for people with the relapsing form of MS, and some emerging for early active progressive MS – but there is nothing to stop you becoming more disabled as your condition advances.
‘Thankfully, we have never been closer to stopping MS, and with the discoveries being made right now, we believe treatments that slow or stop disability progression are a very real prospect.’
Ellie added: ‘Ultimately as long as I’m happy and the people around me are, that’s what matters. Life is short and we just have to enjoy it as much as we can.’
For more information visit www.mssociety.org.uk/STOP-MS. Text FUTURE8 to 70800 to donate £5 and support the Stop MS Appeal.
Messages cost £5 plus your standard network rate, and 100 per cent of your text donation will be received by the MS Society. The MS Society has a free helpline – 0808 800 8000 – and more information can be found at www.mssociety.org.uk