Christina Applegate doesn’t sugarcoat it. Living with MS is “hell,” she said on Good Morning America this week.
Her feelings are understandable. And relatable to others with multiple sclerosis or another chronic illness. MS is painful and disabling. There’s no cure and it gets progressively worse over time.
The many challenges people with MS face are familiar to Kathleen Fuchs, PhD. A UVA Health neuropsychologist, she helps patients with MS cope with their illness. I asked Fuchs about the difficulties of living with MS and what advice she gives her patients.
Here are 5 common challenges people with MS face and her strategies for managing each.
MS Challenge #1: Dealing With a Difficult, Delayed Diagnosis
In her interview, Applegate is frank about the anger and grief she feels. These feelings are both common and valid among people with MS, Fuchs explains.
“Sometimes people feel they didn’t get their diagnosis in a timely manner,” she shares. “Diagnosis can take quite a while because we don’t have a precise test, like a blood test for MS, that definitively says yes/no.”
Instead, an MS diagnosis comes from looking at symptoms over time. “You have to have symptoms that come on at different points in time and involve different parts of the central nervous system,” Fuchs explains.
Bad News in Primetime
Adding to the frustration, the average age of MS diagnosis is 20-40 years old. “MS strikes people in the prime of their lives when they’re not expecting health issues,” Fuchs said. “It really wallops people.”
Applegate learned she had MS while shooting Netflix comedy hit Dead to Me, which she describes as the kind of role she’d always wanted and finally achieved. Now the future of her 4-decade acting career is uncertain.
An Unpredictable Disease
Additionally, living with MS is unpredictable. Fuchs shares patients feel distress because they don’t know:
- When symptoms will come on or disappear
- If they’ll suddenly not be able to do everyday activities
- Whether symptoms will have lasting effects
“The stress of that uncertainty gets to a lot of people,” she says.
Management Strategy: Lean on Others
Fuchs encourages patients to find support in others and reminds them it can take many different forms.
Work With a Therapist
Psychotherapy is one option.
Can’t find a therapist or don’t have insurance? Fuchs recommends connecting with a National MS Society patient navigator. A patient navigator can talk with you about your needs and connect you with services in your community. This service is free.
Depending on your income, you may qualify for Medicaid. You also qualify for Medicare after 2 years on disability. And some therapists offer services on a sliding scale.
If your symptoms make in-person sessions difficult, many therapists offer virtual visits.
Seek Support from Friends & Family
Friends and family can also be great sources of support. Applegate appeared on Good Morning America with Sopranos star Jamie-Lynn Sigler, who also has multiple sclerosis. Applegate said their shared bond “keeps her going.”
MS Society patient navigators can help you find a local support group to connect with others with multiple sclerosis.
MS Challenge #2: Fighting Fatigue & Pain
“Historically, people thought MS wasn’t a painful disease,” Fuchs explains. “That is very inaccurate.”
In reality, multiple sclerosis can cause a burning pain or a “tight” feeling over part of the body, she says.
Fatigue is another common symptom, Fuchs says. Plus, the mental and physical stress of living with MS is tiring.
Need Help Managing the Mental Challenges of MS?
A UVA Health neuropsychologist can help with cognitive issues, coping with difficult emotions, and more.
Management Strategy: Stay Active
“It sounds counterintuitive, but we encourage patients to be as physically active as possible,” Fuchs says. “The more people can move their bodies, the better they’re going to do.”
Fuchs recommends exercising in water, where you’re less likely to fall.
“It also keeps the body temperature down if you’re in a cool pool,” she says. Many people with MS have difficulty tolerating heat.
Fuchs stresses that exercise also provides a mental health boost.
“It reminds people that their bodies can still do things for them,” she says. “It supports their feeling of self-worth and sense that they still have a contribution to make to the world.”
MS Challenge #3: Impacts on Thinking & Mental Processes
In simple terms, cognition means thinking. Lots of things fall under the umbrella of cognition, like paying attention, learning, remembering, and solving problems.
Multiple sclerosis can cause cognitive changes, damaging patients’ thinking and mental processes. Some of most common areas it impacts are:
- Processing information – taking information in through our 5 senses
- Memory
- Concentration
- Planning
- Finding the right words
These changes can range from mild to severe. They make everyday activities harder or, in some cases, impossible.
Management Strategy: Work With a Neuropsychologist
In her work as a neuropsychologist, Fuchs has special expertise in helping patients with cognitive changes.
Services usually start with a cognitive assessment, which means testing how well patients do in different areas like memory and decision-making.
“The assessment gives us information about where you are and your needs,” she says.
Based on the results, Fuchs can make specific recommendations. These might include requesting workplace accommodations or applying for disability if returning to work isn’t possible. She helps people with MS work through both of these processes.
MS Challenge #4: Social Isolation
Applegate says she often doesn’t want to go places because it’s hard.
Most people with chronic illnesses can relate. Pain and other symptoms make going out difficult. They can make even fun activities less enjoyable. You might feel reluctant to make plans because you can’t predict how you’re going to feel any given day.
The problem, though, is isolation can feed negative feelings and depression.
Management Strategy: Think of Your Energy as a Bank
When you have multiple sclerosis, energy becomes a more limited resource than usual. “You only have so much energy each week,” Fuchs explains. “Think about what’s going to stock the bank and what’s going to be spending from the bank.”
Being socially active every week is important. So is rest. “If you have plans on Tuesday, try to keep your Wednesday lighter,” Fuchs suggests.
Also, be discerning about where you spend energy. “Really think about which activities feed your soul and sense of self versus those that take it out of you,” she says.
MS Challenge #5: Facing Stigma
Chronic illnesses like multiple sclerosis mean having different needs. Those things — like walking with a cane — can make you stand out and feel different.
People also might not understand how much your illness impacts your life if they haven’t had similar experiences.
Management Strategy: Shift Your Thinking
First, your feelings are completely valid. Ableism is very real and facing stigma is difficult.
Still, finding a different way of looking at things can help.
Fuchs says many people with MS are apprehensive about using assistive devices like canes because of the stigma attached.
She suggests another way to think about it: the cane keeps you upright and can be a useful signal to others. “It helps people know why you’re walking slow or awkwardly,” Fuchs explains. “It also lets people know they need to give you more time or space to get around.”
Similarly, Fuchs says she commonly hears patients ask with dread, “how long until I’m in a wheelchair?”
Again, it’s a common and valid concern. But looking at it differently sometimes helps.
“If you’re in a wheelchair, you can still get out and about,” she says. “You can still participate. No lie — it’s hard to get around in a wheelchair, but you’re getting around.”
