Paralympic Swimmer Stephanie Millward MBE, who lives in Wiltshire, has bravely spoken out about living with multiple sclerosis (MS), as new research from the MS Society shows that over a third of people living with the condition have kept it a secret.

Stephanie, who lives in Box, was diagnosed with MS in 1998, aged just 16. At the time of her diagnosis she was the British 100 Metre Backstroke champion, and had her sights firmly set on the Sydney 2000 Olympic Games. Stephanie struggled to cope with her diagnosis and stopped swimming for eight years. She also found it difficult to open up about living with MS.

“Many people couldn’t really believe or understand how this could happen to a fit 16-year-old," she said.

"Their reactions were generally unhelpful. I felt embarrassed by having the illness and never wanted to discuss it with anyone, or want anyone to know I was unwell.

“It took me eight years before I was comfortable speaking about my MS. I didn't want to see or speak to anyone. I felt as if I had let myself down and I didn't see any way of coping or any way out.”

MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. It can be relentless, painful and disabling.

According to a recent MS Society survey of over 800 people with MS, more than a third (35%) admitted they had kept their MS a secret. Of those who had hidden it:

• One in ten (9%) have kept it a secret from their partner

• A third (33%) have kept it a secret from at least one family member

• More than a third (34%) have kept it a secret from their employer, while over half (59%) haven’t told their colleagues

When asked why they had kept their MS a secret, more than half of people surveyed (52%) said they were concerned people would feel sorry for them, more than a third (37%) feared discrimination, four in ten (40%) were worried it would impact their career, and three quarters (74%) said talking about MS made them nervous, or worried they weren’t explaining it properly.

Stephanie was persuaded to get back into the pool in 2007. The return to swimming completely changed her life, dramatically improving her MS symptoms, helping her to build confidence, and form new connections

She then went onto achieve incredible Paralympic success, first competing at Beijing 2008. She then went on to win five medals at the London 2012 Paralympics and a further five medals at Rio 2016, including her two coveted gold medals. Stephanie is currently taking part in trials for the Tokyo 2021 Paralympics.

Stephanie added: “As an MS Society Ambassador there is an expectation to talk and now I’m happy to do this - especially if I think it will prevent another person suffering their own ‘eight-year misery’. It’s just so important that people have others to talk to. All our journeys through this life are unique, but so many involve illness and tragedy. It’s critical we learn how to cope with this and be able to ask for help, especially when we’re young.”

Ed Holloway, executive director of digital and services at the MS Society, said: “MS is unpredictable and different for everyone, so talking about it can be tough – whether you’re opening up to a friend for the first time, describing symptoms to an employer, or asking family for support.

“More than 130,000 people live with MS in the UK, and we know many struggle to talk about it. This MS Awareness Week you’ll find new resources on our website to help you start a conversation about MS, and others sharing their stories of speaking out for the first time. No one should have to keep their MS a secret, and our free MS Helpline, online forum and local groups can be a great lifeline too.”

For MS Awareness Week (19-25 April) the MS Society is saying #LetsTalkMS. We’re sharing new tools to help people feel confident about speaking up, and stories of how others found their voice.

For more information visit www.mssociety.org.uk/msweek