Multiple sclerosis (MS) is a complex and unpredictable neurological disorder that manifests in a range of symptoms. While the physical effects—such as movement and speech difficulties—are often visible, many of the disease’s most significant challenges remain hidden. Mental health issues, including anxiety, depression, mood swings, and cognitive impairments, are common but frequently underdiagnosed and underreported.
Known as “the disease of many scars,” MS often refers to the white patches, or lesions, that appear on MRI scans, indicating chronic damage to the brain or spinal cord. However, the mental health toll of MS, an equally critical but often overlooked factor, constitutes one of the disease’s “unseen scars.”
Dr. Luis Felipe Orozco, Global Medical Head of Neurology at Sanofi, and Amanda Montague, Chief Mission Officer at the Multiple Sclerosis Association of America (MSAA), recently discussed the impact of mental health in MS during a conversation about the overlooked aspects of the disease.
A Focus on the Unseen
Historically, the physical manifestations of MS, such as mobility challenges, have garnered the most attention. In contrast, the cognitive and emotional symptoms of the disease, including fatigue, anxiety, and depression, have often been neglected in both diagnosis and treatment. Montague emphasizes that mental health should be integrated into the clinical conversation from the moment of diagnosis. People living with MS must be made aware that, like physical symptoms, cognitive and emotional symptoms can evolve and worsen over time.
“It’s critical that healthcare providers take a proactive approach to educating patients about the mental health aspects of MS,” says Montague. “This includes recognizing the symptoms of anxiety, fear, and depression, and addressing them from the outset.”
Psychiatrists play an essential role in the care team for MS patients, offering assessments and treatment plans to help individuals manage mental health challenges and stress related to the disease.
The Uncertainty of MS
One of the most distressing elements of MS is its unpredictable nature. The symptoms of MS vary widely from person to person, and the disease can progress in unexpected ways. For some, symptoms may remain mild, while others experience more debilitating cognitive and physical disabilities that significantly impact daily life.
This uncertainty often leads to emotional distress, with many individuals reporting feelings of sadness, anxiety, fear, and frustration as they try to cope with the unknown. These emotions can escalate into more serious mental health issues, such as depression or anxiety disorders, exacerbating the overall burden of the disease.
MS and Its Direct Impact on Mental Health
Research has shown that MS can directly affect mental health, beyond the indirect effects of dealing with a chronic illness. Damage to the brain caused by MS lesions can disrupt areas responsible for emotional regulation and cognitive function. This can lead to depression, cognitive dysfunction, or “brain fog,” even in individuals who had no previous history of these conditions.
For instance, damage to the frontal lobe, which governs executive functions and emotional responses, can alter a person’s mood and behavior. This explains why some individuals with MS experience sudden shifts in their emotional well-being that may seem disconnected from their usual personality.
The Importance of Support
The emotional impact of MS can affect not only the individuals diagnosed with the disease but also their caregivers and loved ones. Care partners, who often spend more time with the patient than healthcare providers, can be instrumental in identifying changes in behavior and mood that may go unnoticed during clinical visits.
Montague highlights the vital role of care partners in MS treatment, noting that they provide valuable insights into the daily struggles that MS patients face. Involving caregivers in clinical discussions ensures that the emotional aspects of MS are addressed as part of the overall care plan.
Judy, a caregiver to her husband Roger, who is living with MS, shares, “We’ve gone through lots of changes. At times, Roger was very depressed, but I noticed a turning point in his attitude when we began finding new activities, like hiking, that we could still enjoy together. This shift has given him a more positive outlook.”
While MS can be an overwhelming and challenging condition, managing its mental health impact is just as critical as addressing its physical symptoms. It is crucial to prioritize the emotional well-being of those living with MS, as well as the caregivers who support them. Recognizing and addressing the mental health aspects of MS can significantly improve the quality of life for everyone affected by the disease.
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