“You have MS.” Whether uttered by your primary care physician, your neurologist, or your significant other, these three simple words have a lifelong impact.
For people with multiple sclerosis (MS), “diagnosis day” is unforgettable. For some, it’s a shock to hear they’re now living with a chronic condition. For others, it’s a relief to know what’s causing their symptoms. But no matter how or when it comes, each MS diagnosis day is unique.
Read the stories of three people living with MS, and see how they dealt with their diagnosis and how they’re doing today.
“I remember hearing ‘white noise’ and not being able to focus on the discussion with my doctor,” says Matthew Walker. “I remember a bit of what we talked about, but I think I was just staring a few inches away from his face, and avoiding eye contact with my mother as well who was with me. … This translated into my first year with MS, and with me not taking it seriously.”
Like many, Walker assumed he had MS, but he didn’t want to face the facts. The day after he was officially diagnosed, Walker moved across the country — from Boston, Massachusetts, to San Francisco, California. This physical move allowed Walker to keep his diagnosis a secret.
“I’ve always been sort of an open book, so I remember the hardest thing for me was the desire to keep it secret,” he says. “And the thought, ‘Why am I so worried to tell anyone? Is it because it’s such a bad disease?’”
It was a feeling of desperation several months later that led him to start a blog and post a YouTube video about his diagnosis. He was coming off of a long-term relationship and felt the need to share his story, to reveal that he had MS.
“I think my problem was more of denial,” he says. “If I could go back in time, I would have started to do things a lot differently in life.”
Today, he typically tells others about his MS early, especially the girls he’s looking to date.
“It is something you have to deal with and it’s something that’s going to be hard to deal with. But for me personally, in three years, my life has improved drastically and that’s from the day I was diagnosed to now. It’s not something that’s going to make life worse. That’s up to you.”
Still, he wants others with MS to know that telling others is ultimately their decision.
“You are the only person that is going to have to deal with this disease every day, and you are the only one that is going to have to deal with your thoughts and feelings internally. So, don’t feel pressured to do anything that you aren’t comfortable with.”
As a senior in high school, Danielle Acierto already had a lot on her mind when she found out she had MS. As a 17-year-old, she had never even heard of the disease.
“I felt lost,” she says. “But I held it in, because what if it wasn’t even something worth crying about? I tried to play it off like it was nothing to me. It was just two words. I wasn’t going to let it define me, especially if I myself didn’t even know the definition of those two words yet.”
Her treatment started right away with injections, which caused severe pain throughout her body, as well as night sweats and chills. Because of these side effects, her school principal said she could leave early each day, but that wasn’t what Acierto wanted.
“I didn’t want to be treated different or with any special attention,” she says. “I wanted to be treated like everyone else.”
While she was still trying to figure out what was going on with her body, her family and friends were, too. Her mom mistakenly looked up “scoliosis,” while some of her friends started comparing it to cancer.
“The hardest part of telling people was explaining what MS was,” she says. “Coincidentally, at one of the malls near me, they started passing out MS support bracelets. All of my friends bought bracelets to support me, but they didn’t really know what it was either.”
She didn’t show any outward symptoms, but she kept feeling that her life was now limited because of her condition. Today, she realizes that’s simply not true. Her advice to newly diagnosed patients is not to give up.
“You shouldn’t let it hold you back because you can do whatever you want still,” she says. “It’s just your mind that’s holding you back.”
Slurred speech. That was Valerie Hailey’s first symptom of MS. The doctors first said she had an inner ear infection, and then blamed it on another type of infection before they diagnosed her with “probable MS.” That was three years later, when she was only 19 years old.
“When I was first diagnosed, [MS] was not talked about and it wasn’t in the news,” she says. “Not having any information, you only knew whatever gossip you heard about it, and that was scary.”
Because of this, Hailey took her time telling others. She kept it a secret from her parents, and only told her fiancé because she thought he had the right to know.
“I was afraid about what he would think if I came down the aisle with a white cane wrapped in royal blue, or a wheelchair decorated in white and pearls,” she says. “I was giving him the option of backing out if he didn’t want to deal with a sick wife.”
Hailey was scared of her disease, and scared to tell others because of the stigma associated with it.
“You lose friends because they think, ‘She can’t do this or that.’ The phone just gradually stops ringing. It’s not like that now. I go out and do everything now, but those were supposed to be fun years.”
After recurring vision problems, Hailey had to leave her dream job as a certified ophthalmic and excimer laser technician at Stanford Hospital and go on permanent disability. She was disheartened and angry, but looking back, she feels fortunate.
“This awful thing turned into the greatest blessing,” she says. “I was able to enjoy being available to my kids whenever they needed me. Watching them grow up was something I surely would’ve missed out on if I was buried in my profession.”
She appreciates life much more today than ever before, and she tells other recently diagnosed patients that there’s always a bright side — even if you don’t expect it.