In 1999, when Sue Kelly was diagnosed with relapsing-remitting multiple sclerosis, she wondered what life would be like in a decade.
“We all get an image in our mind that 10 years later we could have a great degree of disability,” said Sue, who works as an OB/GYN nurse at an Arizona hospital and, separately, does home injection training for people with MS.
Instead, she works with a trainer at the gym twice a week, does yoga and feels fitter than ever. And, as an injection training nurse, she helps others overcome discomfort with needles, one of the biggest obstacles to using the medications currently approved for MS.
On June 3, 1999, Sue experienced vertigo and double vision. She feared a brain tumor, so the MS diagnosis came as a bit of a relief. Now, a decade later, she is happy that her daily therapy and lifestyle have kept her symptoms manageable.
Sue attributes her success over the years to a combination of sources: her disease-modifying drug, daily exercise, and support from family and friends.
“Putting all of those things together, that has made a key difference for me,” she said.
In her home injection training work, “I get more back from people than I could ever give. It’s amazing to hear different people’s stories and how they’re dealing with MS,” she said.
“I remember when I was first diagnosed. I had that split second when I opened my eyes in the morning thinking the MS wasn’t there. Then the reality hit, and it was the first thing I thought of each morning and the last thing I thought of before I fell asleep. I felt like my body had betrayed me.”
When Sue talks to people on peer support calls or in meetings, they feel the same way, she said.
“I think the fear of what lies ahead — that fear of the unknown — is so huge right after diagnosis. Little by little, we learn to trust again, by doing thosethings that are good for us.”
As a person living with MS herself, it’s easier to help newly diagnosed people realize that they have power over their MS, Sue said: “Each time I meet with a patient, I do all I can do to help them feel confident and empowered, and congratulate them on taking a positive step in managing their disease proactively.”
Sue and her family planned to travel to Hawaii in the summer of 2009 to celebrate her 50th birthday — and her 10th year living successfully with MS.
“This isn’t what I thought 10 years would look like,” she said. “Life is good.”
Interviewer Danielle English is a master's degree candidate at the University of Denver, and volunteers for the Society's Marketing and Development Department. She was diagnosed with MS in 2002.