A Dream of the Past
Ann Marie Johnson recently had a vivid dream about walking across the Brooklyn Bridge in New York — something she loved doing before her multiple sclerosis (MS) diagnosis in 2002. In the dream, the now 54-year-old was exploring one of her favorite landmarks and taking in the Manhattan skyline.
The dream felt so real that she cried when she woke up. “This dream was the old me … but that’s not my reality today,” she says.
The Emotional Toll of MS
Johnson lives with MS-related fatigue and problems with balance and coordination. But the physical changes aren't the only challenge. She's also dealing with grief for the life she used to have.
"There are times when I'm going through my day-to-day and see changes and … I want to yell, I want to scream, and sometimes I want to cry,” she says. “I like to call that my pity party.”
Living with MS often brings deep uncertainty. The disease can turn your life upside down and force you to create a new normal, say experts. It can change how you see yourself and cause fear, worry, and depression.
"All of a sudden, they have a chronic disease that may cause significant disability," says John W. Lindsey, PhD, director of the Division of Multiple Sclerosis and Neuroimmunology at The University of Texas Health Science Center at Houston. People with MS know what they've lost and "definitely miss it,” he says.
Adjusting to life with MS can be especially difficult if you have nonrelapsing secondary progressive multiple sclerosis (nrSPMS), a type of MS where symptoms slowly worsen over time. But grieving — for lost abilities, independence, and identities — can affect anyone with MS.
Building a New Normal
For years after her MS diagnosis, Johnson's disabilities were invisible. She looked well but felt awful, which made it harder to accept her diagnosis.
In 2020, everything changed. That's when Johnson was diagnosed with breast cancer. It was right in the middle of the COVID-19 pandemic. Her breast reconstruction surgery was delayed, leaving her with a magnetic breast expander that made it impossible to get regular MRIs to track her MS.
When she finally got an MRI after her reconstruction, it showed new MS lesions. Lesions are areas where the disease has damaged nerves. Johnson wasn't surprised — she'd already noticed big changes in her ability to move around. She'd started using a cane and an electric scooter.
"There are some days where I'm OK and I maneuver with the challenges, and then there are days when I'm just like, 'I don't want to do this anymore,'" she says. "You often hear people say, 'Adulting is hard.' Well, MS is hard."
But Johnson has learned she can do hard things. Part of accepting a new normal means she can miss life before MS while still finding ways to feel joy.
The Power of a Support System
Johnson has built a strong support network of family, her partner, and longtime friends. She's also made important connections through MS support groups. The support groups give her a unique space to talk about challenges that family and loved ones may not fully understand.
For Johnson, being open about her struggles has been key to learning to live with MS. She's learned to adapt and ask for help. This might mean switching from buttoned blouses to pullovers, asking a coworker to help with her earrings or changing plans when she's not feeling well. She's also learned that grief doesn't last forever.
"In the beginning, it was like, 'OK, I have to be this strong Black woman, because that's what the world tells you to be," she says. "But I'm human. I can cry, I can yell, I can scream, I can be angry. These are all normal human feelings. The only thing is, I don't stay in that place."
Moving Forward
Learning to see what's still possible is key to bouncing back. With MS, your symptoms can change over time, so you may need to keep adjusting to your new normal.
"I encourage people to stay as active as they are able to and to continue to spend their time on things that matter to them, whether that's work or family, a hobby … and to invest their time where it's most meaningful," says Lindsey.
There's no cure for MS, but treatment advances have led to fewer relapses, better control of symptoms, and slower worsening of disability. Lindsey says treatments work best when started early.
"The treatments that we have are preventive. They reduce the number of new symptoms people have," he says. That's why it's important to start treatment early. Regular doctor visits are also important. Sometimes, symptoms worsen so slowly that you don't notice, but a doctor who sees you every six months can spot changes, Lindsey says.
Johnson credits her doctor for listening to her concerns and giving honest, direct advice. Those conversations helped her convert anger over her MS diagnosis into action.
"Feeling stuck can stop your movement," she says. "It doesn’t have to stop your life."
Finding Joy Every Day
Besides support groups, Johnson is a member of several social media groups for people living with MS. Her advice is the same for anyone struggling with a sense of loss and trying to rebuild their life after a diagnosis: Feel the grief, but also look for joy.
For Johnson, turning up her favorite music — something with a beat that makes her want to dance — instantly boosts her mood. For others, joy might come from cooking, writing, or calling a friend. These moments are part of building a new life with MS.
She tells people to collect and hold onto happy moments to help get through bad days. Try to focus on two happy things for every one unhappy thing, she says.
After two decades of living with MS, Johnson admits she still hasn't figured it all out. There are still moments when she misses her life before the diagnosis.
"MS is unpredictable, and MS is going to do what MS does; the one thing I can do is control how I choose to live with it," she says. "I might not be able to walk across the Brooklyn Bridge anymore, but I can definitely scoot across it."
