Living with RRMS: The ‘space between hope and grief’
Researchers interviewed 17 patients about navigating 'uncertainty' of disease
Navigating the uncertainty of living with relapsing-remitting multiple sclerosis (RRMS) brings a number of challenges, a study shows.
That uncertainty is best described as the intangible, difficult to define space between hope — the sense that things might get better or at least not turn out so badly — and grief, the ever-present fear of losing more to the disease and sadness at what’s been lost already, said researchers following interviews with more than a dozen RRMS patients. Their study, “The liminal space between hope and grief: The phenomenon of uncertainty as experienced by people living with relapsing-remitting multiple sclerosis,” was published in PLOS One.
RRMS is the most common type of multiple sclerosis. As part of it, relapses or flares, where symptoms suddenly worsen, are separated by periods of remission, when they ease or vanish entirely.
The disease is a rapidly changing one and its course is hard to predict, making uncertainty an unavoidable part of living with it, How that uncertainty affects the people living with RRMS hasn’t been well researched, leading a team of scientists in the Netherlands to interview 17 patients who often reported feeling unmoored by a disease that has stripped away their sense of control over their own destinies.
“It’s really tough, losing that sense of control and power. I suppose control is always limited, one doesn’t actually control what happens in life, but … now it feels like playing some kind of Russian roulette and you don’t know how it’s going to turn out,” one patient said.
The ‘uncertainty’ of living with RRMS
A big source of that uncertainty for patients was in having to develop a new understandings of their own bodies. Symptoms of MS can vary widely and patients said it could be hard to recognize if a new sensation might be a sign of relapse.
“Sometimes I get a little scared of a new exacerbation,” one patient said. “Yesterday I felt something in my toe — which was probably because of a tight shoe — and when I became aware of this, I immediately started touching it. Does it tingle? Can I move it? So that anxiety is still in me, is still there.”
Uncertainty also causes issues in daily life. The unpredictable nature of RRMS made many patients feel that they couldn’t get a firm grasp on what they’d be able to do at work or during family commitments on any given day. Some said it could take a lot of trial and error to get an idea what things might be like day to day, and they didn’t always get consistent results.
“This is something I really struggle with,” a patient said. “At work they ask me what I think of it. My reply is, ‘I don’t know’. ‘What do you expect to be able to do?’ ‘I don’t know.’ ‘Do you think you can work for two hours?’ ‘I DON’T KNOW!’. All I know, is that when I do something I’m very tired afterwards. I understand that I have to give in to my fatigue because I’ll only make it worse if I don’t. So now I have to figure everything out and think of the best way to go about it.”
Patients also said they felt like they were forced to raise questions about their relationships with loved ones.
“I immediately said to my boyfriend: ‘If you don’t want to be with me any more, or if our future is gone…’ Those were the things going through my mind at the time,” one patient said. “You just don’t know, because you drag somebody else into it as well. It’s his problem too, of course. So those were the first thoughts I had. ‘Is my future gone?’ ‘Will he stay with me?’”
Thinking about their own future was also stressful.
“I suppose I am the type of person who thinks about their future almost every day, almost every moment,” one patient said. “What I might lose, what I might no longer be able to do, and what my life will look like. When I’m at work, for example, and busy repairing things, it’s on my mind all the time. ‘For how much longer will I be able to do this and … what should I do if I no longer can?’”
The patients’ experiences underscore the importance for clinicians to be sensitive to RRMS patients’ feelings of anxiety and to provide support wherever possible.
“The findings imply the need for a continuous attunement of healthcare practitioners to the expectations, fears, avoidance techniques, and other uniquely personal circumstances of the people with MS in front of them,” the scientists wrote. “Acknowledging the person with an illness as more than a diseased body, part of a complex, interwoven web of others, practices, and institutional systems, could help shift the focus in healthcare from scientific uncertainty to the type of uncertainty that is shaped by patients’ personal histories and broader circumstances.”
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