Stephen’s story: Living with Multiple Sclerosis

“Luckily for me, my MS symptoms are invisible. You can’t see them, but I can feel them. And unfortunately, I deal with a lot of pain.”

For Stephen, the damage to his neurons causes him to have sharp, stabbing pains in his legs, arms, neck and lower back. He experiences constant pins and needles in his hands and feet, as well as a constant burning sensation across his whole body.

But Stephen doesn’t let MS govern his life. The diagnosis was a turning point. Knowing that it was MS that was the cause of his symptoms, Stephen felt he could deal with them and move on.

“I was relieved. And I still felt like a normal person. I didn’t feel it had changed my life too much.”

“Since the diagnosis of MS, I do force myself to make sure I get out and about and live life the best I can.”

“My friends would say I live the best lifestyle because I do what I want, when I want, how I want, and I just always seem to be doing things that they just can’t seem to do or don’t have the confidence to do.”

“I think I’ve always wanted to be that guy that is always out there. I think the diagnosis of MS has pushed it forward so much more because life is short. When you have episodes and attacks, you don’t know when you’re not going to be able to do something.”

People living with MS often experience unpredictable ‘attacks’ of symptoms that vary in severity.² When Stephen was 30 years old, he woke up one morning and couldn’t get out of bed. He didn’t know if he would ever walk again.

After eight weeks of uncertainty, Stephen re-gained functionality in his legs. But he still deals with constant fatigue.

“I really struggle with sleep because I’m in so much pain that I can’t sleep. I’m lucky if I get two or three hours sleep a night. So, having the energy to do stuff can sometimes be a struggle. I can’t go out at 9am and still be out at midnight in one day. But if I can break it up into certain parts of the day or certain parts of the week, then I’m still doing it.”

Stephen has strong connections throughout the MS community.

Having MS means Stephen deals with a lot of health care professionals.

“With my neurologist, it’s been over 20 years. We kind of grow up together and learn together. I educate them about what the feelings are like having MS and what my fears are. And they tell me realistically, what my outcome will be.”

“They’re quite honest with me, and I think I need to be vulnerable to them.”

But it is Stephen’s work as an MS ambassador that drives him.

“For me there’s benefit in people coming to me and seeking advice. I’ve been living with MS now for 26 years so if someone is newly diagnosed, I like them to see, ‘Look at the life he leads after so long living with the illness. He goes to concerts, he’s riding bikes, he’s going clubbing, he’s doing what he wants to do – it hasn’t stopped him.’”