Feeling Depressed and Worried About Your MS? You're Not Alone
A lot of uncertainty comes with multiple sclerosis and learning to cope with it isn't easy. We're here to show you how.
Hannah Perryman was only 24 in 2009 when she began experiencing severe pain and blurriness in her left eye. Her first clue she had multiple sclerosis (MS) came when a neuro-ophthalmologist diagnosed her with optic neuritis, an inflammation of the optic nerve, which is often the initial sign of the autoimmune disorder. “I remember being overwhelmed. I thought: This illness could take away my ability to walk, swallow, and function.”
Affecting one million people in the U.S., MS causes the immune system to mistakenly, and repeatedly, attack the central nervous system (CNS), which consists of the brain, spinal cord, and optic nerves, stripping nerves of their protective coating, called myelin. Nerve damage causes inflammation and a wide range of neurological symptoms, including chronic fatigue, numbness and tingling, vision changes, cognitive issues, and problems walking. Periods of wellness, known as remission, can be open-ended, with no predictable beginning or finish in sight. Relapses—when symptoms flare up again—can also appear without warning, and they, too, can linger for days, weeks, or months.
There are four main types of MS, but 85% who are diagnosed with it have relapsing-remitting MS (RRMS), says Kathleen Costello, associate vice president, Healthcare Access for the National MS Society. Individuals with RRMS experience unique symptom timelines and are forced to reckon with the stress such uncertainty can bring.
Why MS Can Lead to Depression and Anxiety
Initially, Perryman says the shock of diagnosis exacerbated an existing depression that she’d battled on and off since her teens—one she now believes could have been a symptom of MS, all along. (Perryman may be right: Research has shown that myelin loss may actually contribute to depression.) Even so, labeling what she’d been feeling and knowing there were treatment options, eventually lifted a weight off her shoulders. “My diagnosis turned a light on in me in a way nothing else had done so before,” she says.
She vowed to treat her depression and anxiety as a way of grappling with the disease. Regular exercise, therapy (her sessions include practicing mindfulness), plus disease-modifying medications have all helped her manage low mood and the fear of not knowing when the next relapse will strike. So far, she’s made it 10 years without recurring symptoms, and this approach has helped her gain a sense of control. “There’s an understanding that while I have this illness, it doesn’t have me. MS doesn’t run everything I do.”
Half of all people with MS will experience depression in their lifetime, and 44% will experience anxiety, according to Costello. At least part of this is biologic, says Barry Hendin, M.D., chief medical officer of the Multiple Sclerosis Association of America. Inflammation from MS literally scars the brain, leaving visible lesions, which can impact mood.
What’s more, depression is more prevalent in MS than in any other type of neurologic disease, even those with more predictably dire consequences, like ALS (a.k.a Lou Gehrig’s disease, where damaged nerve cells in the brain and spinal cord cause extreme muscle loss, shutting down the body’s ability to function), says Meghan Beier, Ph.D., a clinical psychologist and assistant professor at Johns Hopkins University School of Medicine in Baltimore. A big reason for this, she says, is the uncertainty MS brings. There’s no way to know when the next flare will occur or how the disease will ultimately play out.
People with MS may fear that they have no control over their lives. They know they could end up in a wheelchair—or they could not. Planning for the future can feel impossible. In addition, Dr. Hendin points to a variety of negative impacts of the disease: Relationships may be more challenging, occupational hazards are more common, cognitive decline can occur, and it can be difficult for people with MS to connect to the world around them. Throw in chronic pain, difficulty walking, plus problems with their bladders and bowels, and it’s not hard to see why depression and anxiety are so prevalent, he says.
Do Depression and Anxiety Actually Worsen MS Symptoms?
A recent study published in Neurology found an association between anxiety and depression and a significantly increased risk of relapse in people with RRMS. Even so, an association does not determine causality—being anxious or experiencing low mood was not proven to directly trigger MS symptoms, says study author Amber Salter, Ph.D., assistant professor of biostatistics at Washington University School of Medicine in St. Louis. “Future work is needed is needed to better understand this relationship,” she concludes.
Still, direct or not, the connection is real. “We know being more depressed and anxious definitely causes a person to feel worse and function worse,” said Kevin N. Alschuler, Ph.D., psychology director at the University of Washington Medicine Multiple Sclerosis Center, in Seattle. So while it’s not clear whether those conditions can actually cause an MS relapse, he says it is possible that heightened anxiety and depression may trigger vulnerabilities within the immune system, which, in turn, may cause symptoms to worsen. It’s important to address these issues, he concludes, since being more depressed and anxious lowers quality of life and can make someone with MS feel worse than they already do.
Lifestyle Changes Can Make a Big Difference, Emotionally and Physically
Empowering patients to take control over their disease is key, says Michael Levy, M.D., an associate neurologist with Massachusetts General Hospital in Boston. “Diet, lifestyle exercise—those things are known to improve function.” He recommends an anti-inflammatory approach to eating that reduces unhealthy fats, includes some lean meats, and ditches added sugars.
Research has shown the benefits of exercise in alleviating both anxiety and depression. One study found that exercise had an anti-depressant effect in MS patients. Beier recommends exercise to all her MS patients. She says that a symptom of depression is being less active and more withdrawn. Exercise makes you more active while generating “good endorphins that help [you] feel better.” It can also reduce the stress that can activate the disease; Beier points to a study indicating that stress management was successful in reducing new MRI brain lesions among MS patients. Dr. Alschuler adds that those who exercise also tend to be more interested in taking care of themselves, which can lead to better management of MS.
At the suggestion of a woman she met through the MS Society support group, Perryman ran her first sprint triathlon in September 2012. She’s since run four sprint triathalons, eight half-marathons, and the New York City Marathon (three times!). These days she’s focused on cycling and strength training.
“Fitness and exercise and cardio and sweating—it’s a huge way I manage my mental health,” she says.
Cognitive-Behavioral Therapy Can Help With Anxiety, Too
Cognitive-behavioral therapy (CBT), which focuses on improving a person’s thoughts, behaviors, and/or actions, can also be beneficial for people with MS, Dr. Alschuler says. It involves helping people shift from engaging in fewer unhelpful behaviors to thinking and acting in ways that are helpful to them. Research backs this up: An April 2020 study found that CBT can improve many symptoms of MS, including depression and anxiety.
“The goal isn’t necessarily to eliminate worries or depressing thoughts, but to not have them be blown out of proportion and take over the thought process,” he explains. Dr. Alschuler works with patients to set goals that move them from more depressive behaviors to behaviorally active ones. This means spending less time “fighting against a problem we can’t solve,” to developing skills to stay in the present so as not to be consumed by negative thoughts.
Devon Conway, M.D., a staff neurologist at the Cleveland Clinic in Ohio, says that the vast majority of his patients who learn coping mechanisms to help them deal with the uncertainty surrounding MS are better able to manage their anxiety. And, once they experience a period of stability, he adds, this helps to further curb it, which can lead to a better quality of life long-term.
Beier, too, works with her patients to prevent worry from consuming them. She suggests they set aside specific time each day to “think about things that are bothersome and that could potentially happen." Consider it your designated worry time. When the time it up, focus on all the positive steps you're taking, then set aside the rest. She also said that mindfulness, the practice of focusing on the present moment, can help patients stop worrying about what the future might bring. Think of this way: You can't control the future, but you can control what you do right now.
When you’re feeling particularly low, turning to things that bring you happiness or comfort like music, an amusing television show, or journaling can provide welcome distractions, she says. Perryman agrees, and says she’s binge-watched dozens of shows over past years precisely for this kind of escape, including Lost, Twin Peaks, and Little Fires Everywhere. She suggests learning what helps you feel calm and relaxed so you can turn to those outlets when you feel in the depths of despair.
Seek Help When Worry and Low Mood Become Overwhelming
Consider seeking the services of a mental health care provider, especially if your emotions are getting in the way of relationships and your ability to enjoy life, Beier advises. Her website findempathie.com assists those with health issues in finding a coach who specializes in their condition.
For those who need additional help, anti-depressants and anti-anxiety medications can be effective for some patients if their MS is causing the depression or anxiety, says Dr. Alschuler. Dr. Levy clarifies further: “Medications for depression were developed for depression, not necessarily for depression due to MS. But depression due to MS can also be responsive to medications.” People with MS may feel sad, aggravated, and/or stressed about their condition. These are situational emotional reactions rather than depression, per se, and these feelings would not necessarily improve with anti-depressant treatment, he adds.
Costello says that while the evidence is not “robust” for these drugs significantly improving symptoms in MS patients, they are often prescribed.
If there’s one reassuring takeaway, it’s that enormous strides have been made in managing MS—and even preventing relapse. While there is no cure for this condition, there are now nearly two dozen FDA-approved drugs that suppress or modulate the immune system to prevent it from invading the CNS to stop attacks and flaring symptoms from progressing, explains Dr. Levy. He says that prior to 1993, there were no medications available that could help control the progression of MS. Now, disease-modifying meds can significantly reduce the likelihood of attacks and disability. Adds Dr. Hendin, “That can keep you on a high-functioning trajectory for a very long time, and maybe your lifetime.”
Perryman takes this message to heart. “When I think of my future, I don’t see myself in a wheelchair now. That was real for me.” She’s considering climbing Machu Picchu as her next physical challenge. “I’ve gotten to a place where I feel I can do that. That’s not something I would have been able to do before.”
RRMS Facts: The National MS Society. (n.d.) “Knowledge Is Power.” nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/KIP/KIP_program_book_04-19_FINAL_web.pdf
RRMS Medications: The National MS Society. (2019.) “The Prevalence of MS in the United States, American Academy of Neurology.” nationalmssociety.org/Treating-MS/Medications
Anxiety and RRMS: MS News Today. (2020.) “Anxiety and Depression Linked to RRMS Relapse Risk, Study Finds.” multiplesclerosisnewstoday.com/news-posts/2020/06/26/anxiety-depression-linked-rrms-relapse-risk-study-finds/
Benefits of Exercise in RRMS: Journal of Counseling and Clinical Psychology. (2013.) “Telephone-Based Physical Activity Counseling for Major Depression in People with Multiple Sclerosis.” psycnet.apa.org/doiLanding?doi=10.1037%2Fa0031242
Controlling Stress to Prevent RRMS Brain Lesions: Neurology. (2012.) “A Randomized Trial of Stress Management For the Prevention of New Brain Lesions in MS.” hpubmed.ncbi.nlm.nih.gov/22786596/
CBT and RRMS: Federal Practitioner. (April 2020). “Behavioral Interventions in Multiple Sclerosis, Federal Practitioner Special Issue.” ncbi.nlm.nih.gov/pmc/articles/PMC7182244/