‘MS is part of my life, but not all of it’

An Ashbourne woman diagnosed with multiple sclerosis while backpacking in Australia has spoken about the challenges of living with the condition and the importance of not letting it define her life.

Hailey Stevely was just 20 years old when she received her diagnosis in 2011, after a series of unexplained symptoms prompted concern from her family.

Looking back, she now recognises the warning signs that something was wrong.

“I was tired all the time, I had weakness in my left leg and tremors, but I was 20 so you kind of ignore things,” she recalled.

While visiting her in Australia, Hailey's mother and sister noticed her left leg visibly shaking while she walked. Shortly after returning home to Ireland, she visited her GP and was referred to a neurologist.

“The rest is history,” she said.

At the time, Hailey had never even heard of multiple sclerosis.

“I don't think MS was talked about that much 15 years ago,” she said. “I didn't know what it was.”

Initially, many of her symptoms were invisible to others.

Aside from extreme fatigue, tingling sensations and weakness in her leg, Hailey said she looked perfectly healthy from the outside.

“It was all internal stuff I was dealing with,” she explained.

Following her diagnosis, she began treatment with injectable medication before later moving to oral medication. For several years she continued much as before, but in 2016 a severe infection triggered what is known as a pseudo-relapse, resulting in a week-long hospital stay.

Although she recovered, her mobility was affected and she now uses a rollator at home and a mobility scooter when out and about.

One of the biggest challenges, she said, has been accepting the condition.

“I'd say it took me 10 years to fully accept that this is my life with MS,” she said.

“Not every day is a bad day. You have good days and bad days, but acceptance takes time.”

Now aged 35, Hailey works part-time and remains actively involved with MS Ireland, taking part in mindfulness programmes, educational courses and support events.

She believes connecting with others who understand the condition is invaluable, particularly for those newly diagnosed.

“If I can talk to anybody and support anybody, I will,” she said. “I know how hard it is in those early days when your whole world changes.”

Her advice to others is simple.

“MS is part of my life, but not all of it,” she said.

“You have to deal with it and come to terms with it, but don't let it overtake everything and don't let it ruin everything.”

At the same time, she believes it is important to acknowledge difficult days when they arise.

“It's okay to have a bad day and it's okay to have a bad moment,” she said. “Don't beat yourself up.”

Hailey is sharing her story as part of MS Ireland's MS Journeys: Many Faces, One Community campaign, which highlights the diverse experiences of people living with multiple sclerosis and aims to increase awareness and understanding of the condition.

Despite the challenges MS has brought, Hailey remains determined to focus on what she can do rather than what she cannot.

As she puts it: “Find the joy in every situation.”