The 19th of April marks the beginning of Multiple Sclerosis (MS) Awareness Week, a week aiming to bring more attention to the lifelong condition that affects the brain and the nerves. It is a condition that is often misunderstood, making talking about it challenging. More than 130,000 people live with MS in the UK, yet a recent survey by the MS Society shows that a third of people with MS have kept their condition a secret. Reasons range from a fear of pity, discrimination to it having a negative impact on career or relationships.
The better MS is understood, the better those who live with the condition will be able to articulate their experiences without fear. The following piece, that was originally published in 2018, shows just how hard it can be for women (who are three times more likely to reckon with MS) to be properly diagnosed.
Sophie Allen was 29 and had just had her first child when she experienced what she now knows was the first symptom of multiple sclerosis.
"Everything was going swimmingly," Sophie, now 38, says. "I had a natural delivery, everything was great. Then, when Felicity was about six weeks old, all of a sudden I started getting very 'white' vision. It felt like I'd been out in the sun a bit long and then I'd come in and my eyes were adjusting to it."
At first Sophie ignored it but after a day or two, the visuals were there all the time. She went to see a GP, who referred her to hospital. But despite staying in for days undergoing numerous tests, two years after discharge, doctors still hadn’t established what was wrong.
Sophie hesitated over whether to have another child, in case the visuals had been down to her pregnancy. After three years though, she decided to go for it. Her pregnancy went well but a year later, her health was suffering again.
"I'd get funny sensations in my legs, like pins and needles," she recalls. "It started off in one of my legs and there was a tight feeling, so then over time I would limp a little bit." She often felt tired and struggled with things like the parents' race at her older daughter's sports day. She put tiredness down to nursing twins, and poor mobility to weakness in her core after a C-section.
Sophie admits now that she resisted seeing a doctor, partly because she'd hated having so many tests done after her older daughter was born, and partly out of dread. MS had been mentioned, but not diagnosed, the first time she went to hospital. She had done some clinical training during her degree and after she learned about neurological problems like MS, getting a diagnosis like this became her worst nightmare.
Luckily, her mum insisted she see the GP again. This time, after a referral, more tests and an MRI scan, Sophie was diagnosed with MS.
"I was a bit numb to begin with," she says. "In all honesty, I was kind of expecting it. I was frightened. I guess that's why I didn't go – you kind of bury your head in the sand."
The diagnosis left her feeling alienated from herself: "I was like, 'I'm now this person who is not who I thought I was'. It was disconcerting. I'm one of those people who was always very intuitive with my own body. All of a sudden, it had let me down."
Interest in MS stirred again recently after actress Selma Blair, 46, revealed her diagnosis on Instagram last month. Like Sophie, she lived for years with what she now considers symptoms of MS. At the moment, no cure exists, but treatments can slow the progression of MS and manage symptoms during relapses. At its worst, MS will cause serious disabilities and shortened lifespan. Most people, including Sophie, are diagnosed with "relapsing" MS, which becomes progressive over time. Unfortunately, MS is hard to diagnose, which is why it's so important for GPs to be able to refer patients to a neurologist. Symptoms vary from person to person, but in all cases, they are caused by the immune system attacking the coating that protects nerves (myelin). In the UK, around 130,000 people have MS, with three times as many women as men affected.
MS is a condition overwhelmingly diagnosed in women, usually in their 20s and 30s. Dr Susan Kohlhaas, director of research at MS Society UK, is aware of the anxiety people face at diagnosis: "At a time when people are thinking about career options, families, relationships, buying houses, an uncertain prognosis can be really unsettling."
There are, however, a number of myths about the disease that could contribute unnecessarily to this anxiety. Firstly, she says that women with MS do not need to rule out having a family. If a person has MS in their family, it makes them two or three times more likely to get it. Put simply, the child of a person with MS still has a much higher chance of not getting it than getting it – but it isn’t a sure thing. Secondly, getting pregnant does not make a woman's MS worse. As Sophie found, the chance of having a relapse goes down during pregnancy, then goes up for a short amount of time. There are a few common symptoms MS patients may face during relapses: problems seeing, walking and talking, 'brain fog', pain, stiffness, tremors, bladder and bowel problems, and trouble swallowing. There is no evidence that relapses after pregnancy have a long-term impact.
There are a number of new scientific findings emerging in MS research, which could help stop progression of the disease in its tracks. For now, many patients are feeling the impact of NHS cuts rather than the benefits of new types of treatment. MS Society UK recently highlighted that the Belfast Health and Social Care Trust planned to delay patients' access to key MS treatments (DMTs) in Northern Ireland for up to two years. "People will end up worse off in the long term," Dr Kohlhaas explains, "probably costing the system more long-term just because of short-term cost saving. Plans were eventually dropped after lobbying but our worry was that seems to be seen as a potential route to reducing costs to the NHS."
For Sophie, the first 12 months after her diagnosis were the hardest. She had a short wait to start treatment, and anxiety ran high as she worried about new symptoms developing. She relapsed straight after diagnosis, as her consultant warned her that many do, but with support she has managed to carry on with normal life – for example, walking arm in arm with her dad on days she couldn't walk the kids to school alone. Three years later, she is still fit and active, and often goes cycling on weekends with her husband. (Admittedly, he's still in charge of loading the bike rack.)
In the face of huge stress and change, Sophie's surprisingly upbeat. "It has changed my life," she concludes. "You have to adapt to things, but it's changed my life for the better because I was always a glass-half-empty kind of person. I look at life very differently now than I used to."
If you are facing or dealing with a new MS diagnosis, MS Society UK’s free helpline is available for emotional and practical support on weekdays, 9am-7pm