Uncertainties of MS Challenging in Scary Ways: UK Patient Survey

The uncertainties that accompany multiple sclerosis (MS) are among the biggest challenges faced by people with the disease, with two-thirds of patients in a recent survey saying “they’re scared for the future” because of such unknowns, the MS Society, which conducted the U.K. survey, reports.

“We may all think the future seems uncertain. But people with MS have told us an MS diagnosis can feel like a life sentence of uncertainty,” Sarah Rawlings, the society’s executive director of research and external affairs, said in its announcement.

MS symptoms can come and go, be mild or more severe, and their progression is difficult to foretell, making MS “unpredictable and different for everyone,” Rawlings added. “Our latest research highlights how this can have an enormous impact on people.”

These findings were released as part of MS Society initiatives during MS Awareness Week — April 25 to May 1 — to shed light on the uncertainties of life with MS. Patients’ stories about dealing with such unknowns were shared across several MS Society news and social channels.

Recommended Reading

April 20, 2022 Columns by Beth Ullah

MS and Emotions: Pessimism vs. Realism in Life With Chronic Illness

The group’s survey, aimed at assessing areas of life affected by MS, was completed by 1,200 people with this disease.

Consistent with findings from a recent MS Trust U.K. survey on the impact of MS on patients’ lives, results here highlighted how uncertainty due to MS “impacts all aspects of a person’s life,” the MS Society stated.

More than half of survey respondents said the unpredictability of MS had affected their career (56%) and their friendships (51%). A third (39%) felt its impact on their romantic relationships, with nearly 1 in 5 (18%) saying they had previously stopped dating.

Two-thirds of respondents (63%) said the uncertainty of MS had caused them to stop socializing in the past.

Notably, three-quarters named the uncertainty of MS as one the biggest challenges they faced, and two-thirds reported being scared for their future due to this uncertainty.

Half of these patients (51%) felt isolated as a result of their unpredictable symptoms, and about a third (34%) said they worried about access to future treatments.

“I worry about my condition deteriorating. I don’t know what medication will work for me in the future and what the side effects might be,” said Lauren Robbin, 31, a recently diagnosed patient who said she is experiencing a range of physical and mental symptoms, from abnormal skin sensations to brain fog and fatigue.

“Another big worry for me is having children in the future. My diagnosis has really made me think about this,” Robbin said, adding that “thinking ahead is a roller-coaster,” as new symptoms can strike with little warning.

“I like to stay positive and think everything is going to be alright. But the reality is no one can tell me it will be OK,” Robbin added. “It’s scary not knowing what my future holds.”

MS affects more than 130,000 people in the U.K., Rawlings said, adding that MS Society’s free MS Helpline, online forum, and local groups “can be an invaluable lifeline” for patients needing support in dealing with the disease and its unknowns.

The society also runs regular virtual sessions on Living Well with MS, “which offer emotional and practical support for everyone living with or affected by MS,” Rawlings said.