Ellie Marsh Wiki – Ellie Marsh Biography
A young woman with recurrent multiple sclerosis, which affects her memory and ability to walk, described how her diagnosis affected her relationships with close family members.
Ellie Marsh, 22, from Castle Donnington, East Midlands, was said to have a lifetime ailment in September 2018 after experiencing one-year symptoms of tingling and numbness in her feet and a feeling of heaviness in her legs that impedes movement.
He admitted that at first he struggled to face his diagnosis, especially his impact on family dynamics.
The medical sales rep said he felt that many people, including his family, had seen him ‘with a label on his head’ with MS.
Ellie shares her heartbreaking story as a new study from the MS Society shows that one in five people with the disease in the UK is now under the age of 30.
Speaking to FEMAIL, he said: ‘The most difficult change for me has been my relationships with my very close family, such as my mother.
Now I feel like they are seeing me – and a lot of people are seeing me – as if I have a label on my head that says MS.
‘The conversation always starts with MS and I prefer not to have it – I’d rather not have to think about it every day, but you really have no choice.
“I push my mother away when she wants to talk about her now, because it’s best to block her.”
Ellie also added that she felt quite cranky and anxious – something she never thought she would be sensitive to because she was always a very “optimistic, relaxed and happy” person.
When Ellie first visited her doctor about her symptoms, she said how the doctor suspected it was a pinched nerve, but sent her to a neurologist for tests.
My legs really got heavy and this affected my walking. Then it spread to my hands and arms, ” he remembered.
It was terrible when I was really diagnosed. I went on my own because I thought it was just a follow-up date and told my mom and boyfriend Riley that I didn’t need it there.
The lady who diagnosed me also didn’t know anything about MS, so just “We looked at your MRI and you have MS – but I don’t know much about it, so I made another appointment to see a specialist in eight weeks.”
I said I couldn’t wait that long, I didn’t even know what it was. I was torn, I didn’t know what to do.
I asked if we could go to get some more information that afternoon, and I saw a general practitioner. But my doctor just said, “It’s not the end of the world, you can hit a bus tomorrow.”
Ellie described how she was confused and “piecemeal” and searched for her mother in tears, fearing that she would only have a few bears before being tied to the wheelchair. There are no other neurological conditions in his family.
She has since admitted that MS has had an influence on her relationships, especially those closest to her – her mother, grandmother, sister, and aunt.
I don’t like talking to them about this. As if I just say one thing, that’s all they’ll focus on. So I really pushed them away a bit because I don’t want them to constantly control me, ” he explained.
I know they care about me but I definitely pushed them away so we are not as close as before.
“Obviously we are still close, but when it comes to MS, I push my mother away.”
Fortunately, Riley, 23, with whom she had been together for five years, became a rock and ‘very supportive’ through her hardships – but her girlfriends got the news a lot.
“You always hear stories of people breaking up because they can’t handle such a diagnosis, but we didn’t have any of that,” he said.
Riley and I continued normally. It’s very relaxed and just goes with the flow – we’re not really talking or thinking about it, which is nice.
It was a lot more emotional when I decided to tell my girlfriends – a little more dramatic! They were crying – we were all crying.
They really supported but it was difficult to talk about it. And I’m not sure they fully understand. Me and my friends now have a few more jokes about my balance and things like that, but that didn’t have any negative impact on friendships.
“What he did gave me so many more friends who understood what I was going through, especially MS Together – I now have a lot of friends who have MS and understand everything I’m going through.”
Ellie struggles with her heavy legs and “drop foot” due to MS, causing her to lose her balance and trigger.
“Some days are worse than others,” he said. Some days it is 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.
‘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.
‘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.
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 toda
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