One out of two people who have MS may experience depression during the course of their disease, yet it isn’t discussed much – not with their doctors, and not with family and loved ones. The National MS Society convened a meeting in Chicago in June to focus a light on depression in MS as part of its commitment to drive research and programs in Wellness. The meeting included healthcare professionals, researchers, therapists, program providers, people living with MS and their family members, who candidly discussed this darkest of MS symptoms and its impact on people’s lives.
“There’s a stigma around certain topics,” stated Cynthia Zagieboylo, President and CEO of the National MS Society, during the meeting. “Depression is an area we’ve heard is of concern for many, but it’s discussed by few. We need to recognize that depression makes other symptoms of MS feel worse, and when it goes untreated, it can be life-threatening.”
Hard to Recognize
“No one ever said this feeling could be a symptom of MS,” said Ann Borsellino, recalling the withdrawal from friends and family, depression, and hopelessness she felt not long after she was diagnosed with multiple sclerosis.
There are many shades of depression, from feeling a little “blue” to experiencing deep feelings of hopelessness and suicidal thoughts. “It’s easy to miss a diagnosis of depression,” said psychiatrist Anthony Feinstein, MD, PhD, from the University of Toronto.
Depression is not often a topic discussed during the course of a typical visit to the neurologist or other MS care provider. “Maybe if I had known that depression was a normal symptom of MS, it would have been easier for me to accept help,” noted Ms. Borsellino.
A certain degree of depression is part of a natural reaction to a life-changing diagnosis of MS. Dr. Elisabeth Kübler-Ross famously outlined a cycle of natural reactions to loss that people tend to go through: denial, anger, bargaining, depression, and finally acceptance. But getting stuck in the depression mode is not natural.
Depression can impact everything else
“Depression is like wearing dark sunglasses indoors so you can’t see what’s going on,” said David Rintell, PhD, a psychologist at Brigham and Women’s Hospital and Massachusetts General Hospital whose father had MS and whose parents both had depression. “It robs you of your own resources to cope,” he added.
“The Society’s Wellness meeting identified depression as a significant impediment to people being able to manage their MS and engage in effective wellness strategies,” agreed psychologist Rosalind Kalb, PhD, who is Vice President, Healthcare Information & Resources at the Society and who was an organizer of the meeting. “Family members are also at risk for depression,” she added. “If we can recognize depression and treat it early, we can make it easier for people to manage the challenges of MS.”
Is MS Depression Different?
Depression occurs in MS at a higher frequency than in people with some other chronic disorders, and some believe it is the result of the MS disease process itself, rather than an emotional reaction to it.
Researchers have identified specific areas of the brain that, when damaged, are linked to depression in people with MS. Others have found evidence that immune activity such as inflammation is associated with depression. It is still not known whether MS depression is the same as depression that others experience, but there is clear evidence that people with MS who experience depression can respond well to treatment.
What Treatments Work?
Psychologist Charles Bombardier, PhD (University of Washington) summarized results of some studies that have been done to treat MS-related depression. Research studies often focus on people who have been diagnosed with what’s called “major depressive disorder,” which is quite severe.
People with MS may experience less severe, but chronic, depression that interferes with daily living but may not meet medical definitions of major depression. There has been less research focusing on treatment of people with MS who have chronic depression.
There are many types of psychotherapy (involving talking to a therapist) that are used to treat varying degrees of depression. Dr. Bombardier noted some evidence that “cognitive-behavioral therapy” outperforms other types of therapies for treating major depressive disorder in people with MS. In this type of talk therapy, the therapist helps the individual identify negative thought patterns and behaviors and then work to develop more positive and productive thinking. Other studies have found potential benefit from anti-depressant medication. Some therapists combine medication with various types of psychotherapy.
Several participants noted that research is needed to identify the best ways to teach people coping tools and strategies that will help them be more resilient in the face of adversity. Although all agreed that more research will help determine the best treatment approaches for MS depression, it was also clear that people are being helped right now with the options that are currently available.
A Life-Threatening Disorder
Depression can lead to suicide, particularly when the depression is untreated. Participants discussed the fact that there are no good statistics on how many people who have MS and depression attempt or succeed in taking their own lives. They also noted that very often people won’t say, “I’m having suicidal thoughts,” but they might say, “My family would be better off without me.” Statements like those should be red flags for family, friends and professionals and they should spur intervention.
Others noted a gap in understanding key trigger points during the course of MS that may put a person at high risk for depression or suicidal thoughts. Raising awareness of the risk of suicide and making those at risk aware of helplines and other available support may help prevent it.
“We need courage to speak boldly about suicide – to ‘Tell it like it is,’” stressed Dr. Feinstein.
Access to Care
Participants noted that even when a mood problem is recognized, there are not always adequate sources of professional help available. This is a critical gap, and participants agreed that finding ways to grow the workforce of professionals who can treat MS depression is crucial.
There are several types of professionals who are able to treat people who have depression, including psychiatrists, psychologists, social workers, and psychiatric nurse practitioners. But meeting participants agreed that it’s critical for therapists to have solid knowledge about MS and its unique challenges. In particular, participants spoke about how the unpredictable nature of MS can make it challenging for families to cope with daily logistics, let alone make plans for next month, next year, or the more distant future.
The problem of finding knowledgeable professionals is particularly acute in rural communities. Participants discussed opportunities for “telehealth,” an emerging field that involves using technologies to provide long-distance care, including engagement by phone, computer, and social media. For example, psychologist Dawn Ehde, PhD, from the University of Washington, noted recent successes in treating chronic pain by phone therapy. “Chronic pain and depression often go hand in hand,” she noted.
“These are the type of strategies being explored by the National MS Society’s Work Team on Telehealth,” said Kathleen Costello, MS, ANP-BC, MSCN, who is Vice President, Healthcare Access at the Society. She noted a telehealth collaboration in MS medical care already in place between the Society and the University of Washington, and the likelihood that explorations of new telehealth opportunities would be broadened to include access to mental health care.
Another access issue is the fact that some health insurers don’t cover treatment for psychiatric disorders. Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the Society, commented that “Many people and organizations beyond MS face this challenge. This presents advocacy opportunities to change payer practices, and high potential for partnering with other groups that are passionate about mental health.”
There was general agreement that raising awareness among healthcare providers, people with MS and family and friends would help remove the stigma from depression, and improve the chances that it will be spotted and treated.
Meeting participants discussed the importance of prioritizing research questions to speed solutions for identifying, treating and preventing MS depression. The meeting set the stage for ongoing work by the team to raise awareness, to set priorities, and to develop strategies that will impact the most critical issues around depression.
“Focused meetings like this are key to shaping and informing how to drive progress in this critical area,” noted Ms. Zagieboylo. She pointed out that there are tremendous opportunities to leverage and maximize the impact of programs and services that the National MS Society already has in place.
“We can make a profound change in people’s lives,” commented Dr. Feinstein.
Help Is Available Now
Individuals nationwide may contact the Society’s MS Navigator® program via the Society’s toll-free help line 1-800-344-4867 (1-800-FIGHT MS) or via email (contactusNMSS@nmss.org). The MS Navigator Program connects people to the resources and information they need, including referrals to mental health professionals and in some cases, financial assistance to help cover the cost of these services. MS Navigators are trained to manage crisis calls with the assistance of an internal crisis team.
The Society also offers other opportunities to address emotional well-being, including peer connections programs, support groups, and local wellness-oriented activities such as yoga and aquatics.
The Society offers over 1100 self-help groups across the country – in-person, by phone and online (MSconnection.org). Self-help groups bring people together who share common life experiences for support, education and mutual aid. Connecting with others with similar life experiences can be powerful for positive personal change. Another peer-to-peer program is MSFriends -- a telephone-based help line staffed Sunday-Saturday from 9 am to 12 am ET with trained volunteers.
Read more and view a Webcast about depression in MS
Download the brochure, “Depression & Multiple Sclerosis” (.pdf)
Download the brochure, “Multiple Sclerosis & Your Emotions” (.pdf)
Find ways to get support and connect with others