Learning you have multiple sclerosis (MS) can trigger a wave of emotions. At first, you may be relieved that you know what’s causing your symptoms. But then, thoughts of being disabled and having to use a wheelchair may have you panicking about what’s ahead.
Read how three people with MS got through their first year and are still leading healthy, productive lives.
Marie Robidoux was 17 when she was diagnosed with MS, but her parents and doctor kept it a secret until her 18th birthday. She was furious and frustrated.
“I was devastated when I finally learned I had MS,” she says. “It took years for me to feel comfortable enough to tell anyone that I have MS. It felt like such a stigma. [It felt] like I was a pariah, someone to stay away from, to avoid.”
Like others, her first year was difficult.
“I spent months seeing double, mostly lost the use of my legs, had balance issues, all while trying to attend college,” she says.
Because Robidoux didn’t have any expectations of the disease, she assumed it was a “death sentence.” She thought that, at best, she would end up in a care facility, using a wheelchair, and completely dependent on others.
She wishes she had known that MS affects everyone differently. Today, she’s only somewhat limited by her mobility, using a cane or brace to help her walk, and she continues to work full time.
“I have been able to adjust, sometimes despite myself, to all the curve balls thrown at me by MS,” she says. “I enjoy life and take pleasure in what I can when I can.”
“For most people with MS there are signs, often ignored but signs beforehand,” Janet Perry says. “For me, one day I was well then I was a mess, getting worse and in the hospital within five days.”
Her first symptom was a headache, followed by dizziness. She started running into walls, and experienced double vision, poor balance, and numbness on her left side. She found herself crying and in a state of hysteria for no reason.
Still, when she was diagnosed, her first feeling was a sense of relief. The doctors had previously thought her first MS attack was a stroke.
“It wasn’t an amorphous death sentence,” she says. “It could be treated. I could live without that threat over me.”
Of course, the road ahead wasn’t easy. Perry had to relearn how to walk, how to climb stairs, and how to turn her head without feeling lightheaded.
“I was tired more than anything else with the constant effort of it all,” she says. “You can’t ignore the things that don’t work or that only work if you think about them. This forces you to be aware and in the moment.”
She’s learned to be more mindful, thinking about what her body physically can and cannot do.
“MS is a whimsical disease and because attacks can’t be predicted, it makes good sense to plan ahead,” she says.
“The thought of MS consumed me,” says Doug Ankerman. “For me, MS was worse for my head than my body.”
Ankerman’s primary doctor suspected MS after he complained of numbness in his left hand and stiffness in his right leg. Overall, these symptoms stayed pretty consistent during his first year, which allowed him to hide from the disease.
“I didn’t tell my parents for about six months,” he says. “When visiting them, I would sneak into the bathroom to do my once a week shot. I looked healthy, so why share the news.”
Looking back, Ankerman realizes that denying his diagnosis, and “pushing it deeper into the closet,” was a mistake.
“I feel I lost five or six years of my life playing the denial game,” he says.
During the past 18 years, his condition has gradually declined. He uses several mobility aids, including canes, hand controls, and a wheelchair to get around. But he doesn’t let these hang-ups slow him down.
“I am now at the point with my MS that terrified me when I was first diagnosed, and I realize it’s not so bad,” he says. “I am far better than many with MS and I am grateful.”