(NEW YORK) — When Marti Hines woke up one morning four years ago while on vacation and was unable to move the left side of her body, she said it did not even cross her mind that she, at age 34, could have multiple sclerosis (MS).
Even after an MRI found over 20 lesions on her brain and spinal cord and she was formally diagnosed with MS, Hines said she spent close to six months in “anger and denial,” not willing to believe she had the disease, a chronic disorder of the central nervous system that can cause problems with vision, balance and muscle control.
“Being a Black woman at 34, it just added to me not being able to take in this information,” Hines, now 38, told ABC News’ Good Morning America. “Nothing seemed to make sense.”
When she looked online for information about MS, Hines said the results not only terrified her, but also did not seem to reflect her, a young, Black woman who was healthy and active and had a busy career as a filmmaker and event planner.
“It’s a pretty terrifying thing to try to deep dive and look into, so I was very scared,” said Hines. “And then as I was getting on that road of acceptance, and trying to find resources, I really noticed I wasn’t finding a lot of myself.”
In the same month that Hines was diagnosed, August 2018, actress Selma Blair was also diagnosed with the same disease, while in her 40s.
When Blair shared her diagnosis publicly, Hines said she was still in her own “denial” about having MS.
Over the years though, Blair speaking out about her battle with MS has helped Hines, and she believes countless other people with MS, women in particular.
“I appreciate the awareness that she brought to the disease,” said Hines, who says she has since met Blair at MS-related events. “I feel like this illness has a face now. You can say you have MS and people have some kind of touchpoint to it. I think it’s amazing that she has been so open and vulnerable.”
A changing face of a disease that strikes young women at higher rates
Blair and other actresses who have spoken publicly about battling MS in recent years, from Christina Applegate to Jamie Lynn Sigler, have begun to change the perception of MS, according to both patients and experts.
The three women, now in their 30s and 40s, represent the most common population of MS patients — young and female — who have not always been the public face of the disease, even though it has long affected them disproportionately.
The average age of the start of symptoms for people with MS is between the ages of 20 to 40, and the disease is three times more common in women than men, according to the National Institutes of Health (NIH) and the National Multiple Sclerosis Society (NMSS), a nonprofit organization focused on raising MS awareness and increasing research.
“The label of MS these days doesn’t necessarily conjure up the same image as it did maybe 20, 30 years ago,” said Dr. Suma Shah, a board-certified neurologist at Duke University who specializes in MS. “We used to hear MS and think this is someone who’s going to have disability, who’s going to have a really rough disease course. We’re in a place now where we can’t assume that about the diagnosis.”
While there is no known cause of MS, it is believed to be an autoimmune disease in which the body attacks myelin, the tissue that surrounds nerves, including those in the brain and spinal cord, according to the NIH.
It is an unpredictable disease, one that causes different symptoms with variable timing and frequency in different people, from fatigue, numbness or tingling, weakness, dizziness and vertigo to, in the most severe cases, rendering a person unable to write, speak or walk, the NIH says.
Even for each individual patient, the symptoms of MS can vary at times, ranging from mild to the extreme pain of a flare-up of the disease, as Hines knows well.
“If you have MS, you’re just highly sensitive, so anything that messes with the balance that I try to keep myself at will trigger these symptoms, and then they kind of roll into a domino effect of one another,” said Hines. “It’s only been about three-and-a-half years since I’ve had MS, but I’ve forgotten what it feels like to feel good.”
Why it is women like Hines who are young and otherwise healthy who are disproportionately stricken with MS remains a mystery that researchers are still trying to solve, according to Shah.
“What we’ve looked at specifically are whether there are something genetic, specifically on the X chromosome, which women have two of, whether there’s something hormonal and then environmental factors,” she said. “I think it really is that perfect storm for one individual person of how genetics, hormones, and environmental factors all play in together to allow MS to flourish.”
“And in that young, early 20s, 30s period, we don’t know why. It may just be that again, that perfect storm of having the right genetics and the right hormone levels to allow it to flourish,” Shah explained.
For some women, the disease can strike suddenly, as with the case of Hines, who said she woke up one morning unable to move and received a diagnosis just hours later.
The more common path though is that it can take months or years for a woman to get a diagnosis of MS. In the case of Blair, she has said it took several years to get a diagnosis, a time during which she said she self-medicated and felt like she was “not taken seriously by doctors.’
“I was ashamed and I was doing the best I could and I was a great mother, but it was killing me,” Blair, whose son was 7 years old at the time of her diagnosis, told ABC News’ Robin Roberts in 2019. “And so when I got the diagnosis I cried with some relief. Like, ‘Oh, good, I’ll be able to do something."”
Adding to the difficulty of diagnosing MS is that symptoms may start and then fade away and later return, or in other cases they may develop gradually over many years. The four main types of MS are named according to the progression of symptoms, according to the NIH.
With relapsing-remitting MS, the most common type of the disease, symptoms occur in attacks, called a relapse or exacerbation, followed by a period of remission that may last for weeks, months or years, according to the NIH.
People with secondary-progressive MS have usually had a history of MS attacks and their symptoms and ability to function worsen over time. In the two more severe and rare forms of MS — primary-progressive MS and progressive-relapsing MS — people’s symptoms worsen from the beginning, with no remission, according to the NIH.
There are no specific tests that diagnose MS, which means doctors often rely on ruling out other conditions with similar symptoms. MRIs can also identify lesions on the brain and spinal cord to help diagnose MS.
“It’s really hard because I think for an individual, the sooner you pursue diagnosis, the longer you have to live with seeing your body in your life through this new lens,” said Shah. “But from a medical standpoint, that allows us to start high efficacy-medication early so that we can prevent downstream disability.”
There is no cure for MS, but there are medications now available to help delay the progression of the disease and to decrease the frequency and intensity of symptoms, according to Shah.
“I tell people when I diagnose them, the way that they look on the day they meet me, that’s the goal, no more disability,” she said. “And we have really good medications that get us pretty close to that these days.”
Breaking the stigma of an ‘invisible disease’
What Blair, Applegate and Sigler have done in speaking out about their battles with MS is to put names, faces and experiences to what advocates and patients describe as an “invisible disease.”
“Despite the fact that an estimated million people live in the U.S. with MS and that three-quarters of them are women, so we’re talking about 750,000 women, it is a very invisible disease in many ways,” said Julie Fiol, associate vice president of healthcare access for the NMSS. “It’s invisible in that people aren’t aware of it, don’t quite know what it is when they hear it, and because the symptoms can be invisible.”
When Moyna John, a 30-year-old mother, was diagnosed with MS over two years ago, she said even people close to her struggled to understand her illness at first because she wasn’t in a wheelchair, for instance.
“Some people close to me were like, ‘Well, you look fine,"” recalled John. “People within the chronic illness community in general hate hearing the, ‘but you don’t look sick’ phrase, because it’s not a compliment. We are sick.”
John, of Queens, New York, said that aside from the physical symptoms she deals with as part of her MS battle — from brain fog and fatigue to blurry vision and pain — there is a constant mental health struggle as well.
“This diagnosis came and completely derailed me. I was super depressed trying to figure out what life would be like now and how I would be an adequate mother and adequate wife and all these things,” said John, whose son is now 4. “I still deal with a lot of depression, a lot of anxiety, and that’s something that I have to navigate on a regular basis.”
John said that part of her acceptance of MS has been her work to make the disease less invisible for others, particularly for Black women.
“When I started to look into it, I thought this doesn’t seem to be something that affects women that look like me … I didn’t see young mothers. I didn’t see Black people at all,” she recalled. “I went to a support group and everyone was older, everyone was white, their symptoms were a lot more severe, and it kind of sent me spiraling.”
John began to share her journey on social media, where she said she found that, “Having some sort of community is beautiful.
“I feel like a lot of people don’t realize how much having someone who looks like you matters. It can be really isolating, feeling like you’re the only person dealing with this,” she said. “I think me sharing about me being a mom kind of helps people to think, wow, you can live a life that is busy and still exist.”
Likewise, Hines said she found so much support from the online community of people with MS that she started a YouTube channel, Marti’s MS Life, to document her own journey and create another space for women to talk openly.
“Most people can’t really understand what it means to be in pain every second of every day. Not being able to understand that makes the sick person feel even more isolated. You don’t want to be the person who has the cloud over them,” said Hines. “Everyone asks how you are and you just say, ‘I’m fine,’ because you probably wouldn’t talk to me anymore if I told you how I was.”
Sarah Walsh, a 37-year-old mom of two in Los Angeles, was diagnosed with MS three years ago, just after her oldest child’s first birthday.
She said that because people can’t physically see her MS symptoms, like pain and fatigue and vision loss, she makes sure to talk with friends, family, colleagues and strangers about the disease.
“It may be counterintuitive to people, but I kind of wear it as my badge of honor,” said Walsh. “I’m very transparent about it, like, ‘I’m Sarah and I have MS,’ and I don’t tell people to feel bad, it’s more that I just want people to know.”
Walsh said she also talks openly about her MS because “the burden is too great to do it on your own.”
“I feel like if I had stayed quiet about it, it would have done something to me in a negative capacity mentally,” said Walsh. “What’s helping me stay positive is to talk about it, to be supported.”
She continued, “I just never want the MS to beat me. That’s my goal. I’m very adamant about that. It won’t be the only thing that’s left at the end of day.”
Copyright © 2022, ABC Audio. All rights reserved.