One-third of Patients in the UK Hid MS Status, Poll Finds

An MS Society survey found that about one-third of people with multiple sclerosis (MS) in the U.K. have kept their condition hidden from their partner, family members, employer, or work colleagues.

To help mark MS Awareness Week, observed in the U.K. April 19–25, the nonprofit organization released results from a poll of 800 MS patients about barriers to making their health status known.

“More than 130,000 people live with MS in the U.K., and we know many struggle to talk about it,” Ed Holloway, the society’s executive director of digital and services, said on a webpage about MS Week.

“This MS Awareness Week you’ll find new resources on our website to help you start a conversation about MS, and others sharing stories of speaking out for the first time. No one should have to keep their MS a secret, and our free MS Helpline and local groups can be a great lifeline, too,” he added.

The survey revealed that, of those who hid their condition, one in 10 (9%) kept it a secret from their spouse or partner, 33% kept it hidden from at least one family member, more than one-third never told their employer, and 59% haven’t revealed their status to colleagues.

When asked why they had opted to conceal their MS, more than half were concerned that people would feel sorry for them, 37% feared discrimination, 40% were worried that knowledge of their disease would affect their career, and 74% reported that discussing MS made them nervous or worried that they weren’t explaining the disease properly.

To help break the silence, the theme for MS Awareness Week is #LetsTalkMS. The organization will feature stories, blogs, and resources to help supporters start conversations about MS. Using that hashtag, and tagging @mssocietyuk on Twitter and Instagram, supporters are asked to share a photo of themselves on social media explaining how they “came out” with MS.

In one blog post, patient Hinna Sheikh said she was diagnosed with relapsing MS last November after experiencing symptoms since May. “At first I thought my eye problems were a result of increased screen time. It turned out to be optic neuritis. When I first went to the GP [general practitioner] she mentioned MS but said they needed to run a lot more tests,” she said.

“I’ve been going through my own process of coming to terms with it and making it a reality,”  Sheikh added. “I think in the South Asian community, we’re not always great about opening up and talking about disabilities, but I do think it’s getting better.”

Another patient, Rachel Cooper, described telling people at work that she has MS. “At first I only told my boss, and I thought I’d get away without telling anyone else,” she said. “That was fine for a year or so. But then I found myself feeling resentful that I couldn’t explain why I yawned my way through meetings. Or why I sometimes had slurred speech in the afternoons, and had to write down every conversation so I didn’t forget the details.”

For the week, the organization also partnered with MS patient Robin Hatcher, who is part of the improvisational comedy troupe The Noise Next Door. The initiative called on individuals living with the neurodegenerative disease to “laugh in the face of MS” during #MSAwareness Week by relating their funniest or strangest moments pertaining to MS.