The impact of multiple sclerosis on the family may go unheard as sufferers and carers alike fail to talk about their emotions and the struggle to cope, writes Hilary Freeman
Sam Sheppard is adamant that, should she ever become severely disabled by multiple sclerosis, she doesn’t want her husband Rob to have to care for her.
“I worry about the future,” admits the mother of two from Surrey, who was diagnosed with the condition eight years ago, at 32. “MS has changed the dynamics of our relationship and that does make me feel insecure. I sometimes think Rob could have a better life with someone else and I’ve told him. But he’s always been incredibly supportive and tells me not to be so silly.”
The way Sam feels is not unusual. According to the MS Society, 71 per cent of sufferers receive unpaid unpaid care, support and assistance from a friend or family member. From the day of diagnosis, MS inevitably changes relationships and traditional roles. Dealing with these changes can be tough and often leads to resentment and depression.
“MS has a huge impact on families,” says Bernadette Porter, consultant nurse in MS at University College London Hospitals NHS Foundation Trust. “People think of caring as looking after old people, but that’s not the case in MS, which affects younger people, often with young families. Sometimes children become carers, juggling school and homework with caring, and often they are very afraid. These people are not on the radar. As a society, we often just expect people to be carers and don’t offer them adequate support.”
According to Pam Macfarlane, chief executive of the MS Trust, the cost of caring is often hidden until a crisis looms. “There’s a financial cost – people with MS often have to stop working, affecting family finances. There’s a practical cost – carers are rarely shown the correct way to lift people, for example, leading to injury, and many don’t feel able to say that they need a break,” she says. “There’s also a big emotional cost – both family carers and people with MS feel a lot of guilt and avoid talking about how they’re feeling for fear of hurting their loved ones’ feelings.”
MS has changed the dynamics of our relationship and that does make me feel insecure
Steve McIntosh, policy manager at Carers UK, says it’s essential that people with MS and their families have access to good quality, affordable and flexible care services. “Too often the kind of support which focuses on maintaining disabled people’s and carers’ quality of life, interests and relationships isn’t offered or just isn’t there for families,” he says.
“Local council carers’ assessments and community care assessments for disabled people are supposed to look at wellbeing, relationships, interests and hobbies. So couples should try to make sure they speak to the social workers doing the assessments about what support is available, not just to meet care needs, but to ensure their quality of life as individuals and as a couple.”
Since her husband Henry, 61, was diagnosed with MS, 11 years ago, Angie Ettinger, 62, says their relationship has changed in unexpected ways. “We run a clothing business together in north London and I’ve suddenly had to become the physically stronger partner,” she says. “I’m the one who has to move and lift things. Henry was always incredibly active, but now he can’t keep up with me.”
They have coped by learning to adapt. “He can’t play golf anymore and we’ve had to move from our house to a flat because he couldn’t manage the stairs. It’s been an adjustment, but I’m full of admiration for him. He’s always smiling and has an incredibly strong will.”