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Multiple sclerosis (MS) is a serious condition that comes with a variety of symptoms, often different for each person. But about half of people with MS share a common condition — depression. Although MS-related depression is well-known in the medical community, it is still widely underreported, underdiagnosed and undertreated. There are also several misconceptions surrounding MS and depression. Rehabilitation psychologist Abbey Hughes, Ph.D., works with individuals with MS and their loved ones to help clear up some of these myths and help them address and manage mood symptoms.
Truth: Each person with MS has an ability to adapt in the face of adversity — this is called resilience. Resilience helps individuals cope with stress and reduce the chances of developing depression. While many individuals with MS may have similar symptoms or experiences, only about 50 percent develop depression that interferes with their daily functioning over the course of their life.
“Resilience isn’t necessarily affected by the severity of MS. Even patients with severe or progressive forms of MS can be quite resilient and do not have clinically significant depression,” points out Hughes. While depression is common in those with MS, it is not universal and shouldn’t be considered normal or expected. “Rather, individuals with MS and their families should pay attention to symptoms of depression and notify their health care provider, as there are effective treatments, including therapy and, for some, medications,” adds Hughes.
Truth: “It’s important to note that depression in MS may look different than our typical notions and assumptions about depression,” says Hughes. Sometimes, an individual with MS may experience depression as irritability, anger, not feeling like oneself and/or uncertainty about the future.
“Symptoms of depression based on recognized diagnostic criteria include fatigue and difficulty concentrating, which overlap with symptoms of MS. Therefore, they are not always a good indicator that someone with MS is depressed,” explains Hughes.
A physician might use a questionnaire to help identify signs of depression in MS patients. “If a patient comes to the appointment with a family member, it can be helpful for the family member to share their observations and provide examples of specific behaviors. Keeping a daily diary to track the frequency and severity of mood symptoms can also be helpful,” suggests Hughes.
Truth: Grief is a reaction to a loss, whether it’s a loss of a loved one or loss of an ability. It is understandable and normal for someone who has MS to experience grief in the face of progressive symptoms, such as diminished mobility, vision, flexibility or energy. As symptoms worsen or flare up, a person may need to use a wheelchair, leave a job or stop driving a car. Adjusting to these and other lifestyle changes comes with an understandable grief reaction.
“An important distinction between grief and depression is that grief is temporary,” says Hughes. Individuals with MS may seek the help of a psychologist or psychiatrist to cope with grief or depression. However, the treatment for each condition may look different. “When treating depression, the focus is often on helping people reduce feelings of hopelessness, worthlessness and, for some, thoughts of suicide. Grief is not typically associated with these feelings, so the focus of therapy is likely to be different,” points out Hughes.
Truth: As MS progresses, it can affect numerous bodily systems. This can cause issues such as muscle spasms, vision problems, difficulty walking or problems with bowel and bladder function. These physical challenges can be incredibly frustrating and may seem like the worst part of MS, especially from the perspective of someone who doesn’t have MS.
But what may not come up in conversations and can be hard to notice, are mood and cognitive issues associated with MS. Emotional difficulties, including depression and anxiety, can often interfere with daily functioning more so than physical symptoms. Apathy or anxiety may have more power than muscle spasms or dizziness to hold someone back from enjoying life.
Truth: Fatigue is one of the most common MS symptoms, but it can also be a sign of depression. And so can certain cognitive issues, such as poor concentration and indecisiveness. MS can mask some of these depression symptoms, making it difficult to diagnose this condition.
In addition to being a symptom of depression, cognitive issues may also lead to or worsen depression. MS may affect cognitive functions such as memory, attention, information processing and reasoning. Problems with any of these functions may negatively affect a person’s self-image and self-worth.
“One way that individuals with MS can keep track of cognitive changes is to participate in a cognitive evaluation,” suggests Hughes. This test can be performed by a psychologist experienced in working with patients who have medical problems, such as a rehabilitation psychologist or neuropsychologist. “It is often a good idea to get this test done at the first signs of difficulties, as it can provide a baseline for future comparison,” says Hughes. “This evaluation can also help determine if treatment, such as cognitive behavioral therapy or cognitive rehabilitation, would be beneficial for improving fatigue, mood, and/or cognitive symptoms.
MS-related depression can be difficult to identify and understand. Recognizing and clearing up some of the most common myths is a great place to start helping MS patients and their families get proper diagnosis and treatment.