MS and Mood Changes: What You Can Do to Cope
If you live with multiple sclerosis (MS), you know that—along with a range of physical symptoms—the disease can take a mental and emotional toll, as well. Even if you’re not otherwise prone to depression, anxiety, or fluctuating moods, an MS diagnosis can change that.
“For many people, a diagnosis of a lifelong condition like MS is life-altering and can represent a degree of emotional trauma in response,” explains Leigh Charvet, Ph.D., clinical neurologist, professor of neurology, and director of MS research at NYU Langone Health in New York City. “Because MS is largely unpredictable in its course, a person with a new diagnosis has to adjust to living with the unknown of how the disease may affect them in the future.”
Not only that, but the autoimmune disease itself causes changes in the brain that can affect mood. According to Maureen Empfield, M.D., a psychiatrist based in Mount Kisco, New York, whose patients include people living with MS and other chronic degenerative conditions, “There is often an interplay of biological—that is, disease-related brain changes—and psychosocial factors.”
What she means is that multiple sclerosis causes demyelination—loss or destruction of the protective sheath of tissue surrounding the nerve cells that carry impulses—and damage to nerve fibers in the brain, and this damage can cause emotional changes. Specifically, cortical atrophy and lesions in certain regions of the frontal lobes of the brain can occur in MS, and those have been associated with major depressive disorder. In addition, some drugs, like corticosteroids and interferon medications, can trigger or exacerbate depression and other psychological and emotional changes in people with MS.
Common Emotions with MS
Know that you’re not alone if you’ve experienced negative emotions related to the disease. The following are some of the more common moods and negative emotions people living with MS experience:
Shock can be the first reaction people experience when they’re told they have MS. “When I was first diagnosed, I was numb,” says Rennie Rankin, 49, of North Brunswick, New Jersey, who was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2003. “It was as if I was outside watching someone else’s life unfold.”
Anger and Irritability
Anger is a powerful emotion and quite common in people living with MS. One study published in the Multiple Sclerosis Journal in 2014 suggests that people who had MS experienced more anger than those who didn’t. It also was suggested that those who internalized their anger—mostly women—reported a lower health-related quality of life. That’s how they perceive their own physical and mental health.
Fear and Anxiety
Fear of the unknown can cause anxiety, and that can be a big factor for people with MS. “They can fear future disease activity or relapse,” Charvet says, and this can result in increased sensitivity and concern that even small changes could be signs of bigger issues.
For example, everyone experiences occasional cognitive slips, such as forgetting their keys or having difficulty finding the right word in a conversation, but people living with MS might worry that such experiences “could represent disease progression or activity,” Charvet says.
Grief and Sorrow
Although many people associate the term “grief” with the death of a loved one, grief is a natural reaction to any type of significant loss. And people with MS often grieve the loss of their former selves: their healthy selves, their life before diagnosis, or the life they could have had if not for MS.
In a small Swedish study, 62% of participants with MS experienced chronic sorrow due to feelings such as loss of hope, loss of control over their bodies, or loss of social relationships, among other losses.
“There are high rates of major depressive disorder in MS,” Empfield says. It’s estimated that depressive disorders occur in up to half of people with MS, which is roughly two to three times the prevalence of depression in the general population. “There are also high rates of suicide,” Empfield says, since depression can sometimes lead to “decreased quality of life, social isolation, and substance misuse.”
How to Manage Tough Moods and Emotions with MS
While it’s normal to have negative emotions with MS, it’s important to find healthy ways to express and manage them.
Acknowledge the Emotions
Recognizing and confronting negative, frightening, or painful emotions with MS is an important first step toward managing them, alleviating them, and keeping them from destroying your quality of life.
Knowledge is power, and the more you educate yourself about your disease, the less vulnerable and anxious you’re likely to feel.
“Education is key to understanding the aspects of MS management,” Charvet says. There are many resources with information about all aspects of MS, including the National Multiple Sclerosis Society (NMSS) and our site and app. Read, research, and talk with other people who live with MS. And use your doctor visits as an opportunity to ask questions to inform and empower yourself to successfully manage the disease.
For some people, it’s hard to ask for help or to admit they’re not okay. But give yourself permission to ask the grocery clerk to carry your bags to your car or to call a trusted friend when you want to vent. Find a local support group or reach out to others here on the MS community when you need support.
“The support of other people with MS is great because they understand what you’re going through and they don’t judge,” Rennie says. There’s no reason to go through tough times alone. Social support has been shown to help some people better manage their conditions.
Many people who live with MS swear by meditation as a relaxation technique and a stress management tool. Rennie is a big proponent of meditation, which she practices regularly. Mindfulness meditation, says Charvet, “is a powerful and research-backed approach to managing difficult emotions. It can both improve mood and relieve anxiety as well.”
“I also suggest gratitude journaling,” Rennie says. “Seeing all the good things you have to be grateful for can be very powerful in the face of depression.”
The benefits of exercise for people with MS is well known. Aerobic exercise has been shown to help improve heart health, bone density, flexibility, and bladder and bowel function. It can also help with energy levels, cognitive function, and mood. In fact, exercise causes the body to release endorphins, which are feel-good chemicals for the brain, proven to help lift mood.
Rennie likes yoga and teaches chair yoga for people with mobility issues. Stretching, walking, or just moving your arms can be “useful in discharging the physical aspects of stress and negative emotions,” Charvet says.
Get Evaluated by a Neuropsychologist
See a neuropsychologist to evaluate your cognitive function, which can also be adversely affected by MS and can add to negative emotional and mood changes.
“All people with MS should participate in serial, repeated neuropsychological evaluations to establish baseline cognitive skills and to screen for potential declines over time,” says Gianna Locascio, Psy.D., a neuropsychologist at NYU Langone Hospital–Brooklyn.
See a Mental Health Professional
If feelings of depression, anxiety, or other emotions become chronic or feel overwhelming, you should see a mental health professional, preferably one who treats people who have MS. The NMSS is one of several great resources for finding mental and emotional health support.
“Treatment for depression can include antidepressants and cognitive behavioral therapy,” says Empfield.
Rennie, who is in therapy and takes antidepressants, has found both very helpful in managing her depression. “Some people are opposed to [antidepressants], but for me, I feel that if I need [medication] to feel better, I’ll take it,” Rennie says.
Antidepressants can be particularly useful because some of the depression in MS is because of changes in the brain, and the antidepressants can help to regulate the neurotransmitters that are involved with mood.
Many people find that a combination of antidepressant medication and psychological counseling is more effective than either of them alone.
Focus on Life and Living
While living with MS is probably not something you ever expected, it doesn’t have to derail your life plans. “Put the emphasis on living,” Charvet says. “Don’t let your diagnosis turn into a limitation; continue to pursue your life and goals as you’d intended before your diagnosis, and don’t unnecessarily restrict activities or plans.”
There’s no doubt that living with MS can be challenging, confusing, even scary. But thanks to increased awareness of the disease and advances in research, technology, and medicine, there’s more hope and more medical and emotional support for people with MS than ever before.
While it may seem more important to focus on physical health, it’s also important to care for your mental and emotional health. Empfield stresses that “screening for and treating emotional disorders in people with MS is critical” to their overall health and well‑being.
Let your doctor know you’d like to discuss your mental health. If they aren’t responsive or helpful, you might want to seek out a new doctor or make an appointment with a mental health professional who can help you handle any negative MS emotions you’re experiencing.
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