Author
Chmaika Mills , Neuropsychologist
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3 May 2026 | ~04:46 Engagement Time
Multiple sclerosis (MS) is a chronic autoimmune disease that affects nearly 1 million people in the U.S. Chronic diseases last for at least 3 months and tend to worsen over time. Usually, the symptoms can be managed but the disease remains uncurable. When people are diagnosed with MS they worry about the diagnosis, treatment, and prognosis, and how their family and jobs might be affected. Unfortunately, the relationship between MS and emotions is often overlooked. Once people with MS (“PwMS”) become aware of changes in their mood or behavior, they must then decide whether to ask for help. Mental health stigma can make this decision difficult.
Having a chronic disease increases the risk of developing mental health disorders like anxiety or depression. Having a mental health disorder also increases the risk of having a chronic disease. Chronic diseases and mental health disorders become trapped in a cycle were the symptoms of one can increase the symptoms of the other. Mental health disorders are common in MS. They can be a symptom of MS (caused by MS brain lesions that can affect emotional regulation), a side effect of medication, or emotional response related to having MS. Not only are mental health disorders common in MS, PwMS are 3-4 times more likely than the general population to develop one. Up to 50% of PwMS experience depression in their lifetime and up to 60% report symptoms of anxiety. Pseudobulbar affect (inappropriate laughing or crying) and adjustment disorders (an excessive response to stress) are also common. Other emotions frequently reported by PwMS include irritability, grief, and confusion. Family and care partners are also impacted by mood disorders and experience a range of emotional and physical symptoms that are often overlooked. Furthermore, care partners’ mental health can affect the emotional state of PwMS and vice versa.
The World Health Organization defines health related stigma as “the negative association between a group of people who share certain characteristics and a specific disease…people are labelled, stereotyped, discriminated against, treated separately, and/or experience loss of status because of a perceived link with a disease.” Stigma can be internalized (negative feelings about yourself, particularly at diagnosis), anticipated (fear of future stigma), and external (directed towards you from others). It results in discrimination that can be deliberate (e.g., avoiding, humiliating), unintentional (e.g., staring directly, avoiding eye contact), and even due to well-intentioned behaviors caused by unconscious biases (e.g., changing how you speak to someone). Each type of stigma can negatively affect your overall health and well-being. Although we usually focus on external stigma, internalized and anticipated stigma are also harmful. Internalized stigma affects your self-perception and can result in self-blame and shame. Fortunately, over time most people successfully incorporate having MS into their identify. Anticipated stigma may predict social isolation.
Although the severity of experienced stigma reported by PwMS (low to moderate) tends to be less than in other chronic conditions, 57%-100% of PwMS report experiencing stigma. Stigma in MS occurs across multiple topics related to the physical, psychological, and social aspects of MS. For example, there is stigma about the disease because symptoms like pain and fatigue are invisible. Stigma in MS is associated with negative psychological and physical outcomes. PwMS who experience stigma report higher rates of depression, anxiety, interpersonal problems, unemployment, and overall poorer quality of life. It can affect functional independence and willingness to seek medical attention for initial diagnosis and ongoing care. Furthermore, although disclosing their diagnosis, for example, to employers, is associated with better adjustment and well-being, stigma can cause PwMS to hide their diagnosis or isolate.
Treatment for MS mainly focuses on managing neurological symptoms. However, considering that stress is a well-known trigger for MS symptoms, it is equally important that emotional factors are also managed, including the effects of stigma. The experience of stigma, and thus one’s response to stigma, can change over time. Stigma can increase with the level of disability; so, people with progressive forms of MS and greater disability may be more greatly affected by stigma. On the other hand, people who have had MS longer tend to report lower levels of stigma. As people adapt to MS, anticipated and internalized stigma may decrease, and people learn strategies to manage stigma. Additionally, over time people build support systems and communities that reduces their likelihood of being exposed to stigma and protects them against the negative effects of stigma. You should also take an active approach:
Whether you have lived with MS for a week or decades, know that you may face stigma, from yourself and outside influences, and it may hurt you. However, stigma does not have to define you. There is growing awareness and acceptance of chronic diseases and that emotions can be overwhelming and sometimes navigating them requires professional support. Use this to your benefit and do not let stigma prevent you from reaching out for help.
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