Living with multiple sclerosis: ‘When you bring a long-term illness into a family, it’s the scariest thing ever’

At night when Mary Devereux tries to go to the toilet, she often falls on the ground, as her legs are not working properly. During the day, she can’t walk for more than a few minutes at a time, because the muscles in her lower body are so sore and tired.

The 57-year-old says her life has changed significantly since she was diagnosed with multiple sclerosis (MS) 13 years ago.

MS is a condition that causes damage to the nerves in the central nervous system, which consists of the brain and spinal cord. The symptoms can include muscle stiffness and problems walking and talking.

“At 45 I was diagnosed with MS. I thought everything that was going on was just down to being busy,” says Devereux. “I had a fabulous job, but was just always on the road. Lo and behold, I had MS. It was a shock. I knew there was something wrong with me, but I just didn’t know what. If I got the flu, things might be crappy for a few days, but then they get better. But when you bring a long-term illness into a family, it’s the scariest thing ever. Somebody gives you a diagnosis that’s going to be life-changing.”

For the first five years, she says, she ignored the diagnosis. Eventually, as her symptoms worsened, this was no longer an option. She had to give up her job, which she loved. She is no longer legally allowed to drive due to the impact the diagnosis has on her cognition.

“That was like a light bulb moment, losing the car,” she says. “I felt like my role as a mother was gone if I couldn’t do the simple and basic things of picking up my children from school, or if I wasn’t the first person they were going to call.”

Devereux is speaking following the publication of a survey by MS Ireland that highlights the needs of those living with the disease. The survey found the vast majority (91 per cent) of respondents reported that their diagnosis affects their daily lives, with 31 per cent indicating it has had a substantial impact.

Alison Cotter, advocacy and research officer with MS Ireland, says there are different types of MS and it is a “very varied disease”.

“Symptoms, though it can vary between people, often include fatigue, cognition and mobility,” she says. MS “affects the [diagnosed] person, but also affects the people around the person.”

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About half (52 per cent) of the people surveyed in the research indicated they had a friend or family member who provided them with care and support, with 35 per cent of those receiving care for more than 31 hours a week.

“That’s a full-time job on top of the rest of their life. This is a powerful statistic around the importance of carers to keep people living with MS at home,” she adds.

The findings of the survey highlight a number of issues around access to necessary services. Some 19 per cent of respondents waited more than six months for their last neurologist appointment, the survey found, while 41 per cent had to travel more than an hour each way to see their neurologist.

In terms of neurorehabilitation, which can improve function, reduce symptoms and improve the wellbeing of patients, less than 2 per cent accessed services, while 60 per cent were unaware of them.

Rebecca Maguire, assistant professor in clinical psychology at Maynooth University – and a person living with MS – says the challenges faced by those with the condition are “quite consistent”.

Maguire, a lead author of the report, says the psychological impact of being diagnosed with the disease is “something we don’t speak about as much”, but fears about the future, anxiety and depression are “quite common” among those with the diagnosis.

Some small improvements are noted in the survey too, such as the level of those in employment. “This could be a result of remote working in light of Covid,” she says.

[ Multiple sclerosis: ‘It’s the fear of the unknown of what it might bring’ ]

Maguire says there are practical things that could be done to improve the lives of those with MS, such as a greater provision of services, particularly in more rural areas.

According to the report, those outside Leinster were more likely to have an unmet need for neurology services, with those living in Leinster (71 per cent) more likely to have had an MRI scan compared with those in Munster (63 per cent) or Connacht (65 per cent).

A spokeswoman for the HSE said it recognises neurological care should be “equitably distributed across the country”. There are currently 10 neurology centres nationally, the spokeswoman said, with work being done on a “hub and spoke” model for neurological care to ensure better geographical access across the State.

Living in Limerick, Devereux sees a neurologist every 18 months, though she says she is “lucky” as she has gone private. There is a need for psychological support, too, she says, to assist people to come to terms to just how much life will change.

But, in terms of her own life, there has been progress, she says. She is now on medication that has reduced her pain greatly. Acceptance of her diagnosis has also improved.

“I wasn’t in a great place. I was always a fixer and I couldn’t fix me. In the last two years, I’m not as afraid as I was. I do miss my job. I miss being the earner. I miss my independence and I miss the life my husband and I had planned going into old age.

“I miss myself. These days when I’m waking up in the morning, I’m checking to see what parts work before getting out of the bed. I’m in a better place but it has taken a long time.”