May is Mental Health Awareness Month. It is important for our community members to learn about the effects of rare diseases, including ADEM, AFM, MOGAD, NMOSD, ON, and TM, on mental health. According to a survey conducted by Rare Disease UK, only 1 in 7 respondents felt they received adequate psychological support following a rare disease diagnosis. A common symptom of rare neuroimmune disorders is depression, and many of our community members experience the effects of depression following diagnosis.
As discussed in our TM information sheet:
“Individuals with ADEM, AFM, NMOSD, MOGAD, NMOSD, ON, and TM should be educated about the effect of these rare neuroimmune disorders on mood regulation and routinely screened for the development of symptoms consistent with clinical depression. Warning signs that should prompt a complete evaluation for depression include failure to progress with rehabilitation and self-care, worsening fixed low mood, pervasive decreased interest, and/or social and professional withdrawal. A preoccupation with death or suicidal thoughts constitutes a true psychiatric emergency and should lead to prompt evaluation and treatment. Depression is not due to personal weakness or the inability to “cope.” It can have devastating consequences; not only can depression worsen physical disability (such as fatigue, pain, and decreased concentration), but it can have lethal consequences. Despite the severity of the clinical presentation of depression in rare neuroimmune disorders, there is a very robust response to combined aggressive psychopharmacologic and psychotherapeutic interventions. With appropriate recognition and treatment of depression, complete symptom remission is standard.
During the early recovery period following a rare neuroimmune diagnosis, family education is essential to develop a strategic plan for dealing with the challenges to independence following a return to home. Ongoing problems typically include ordering the appropriate equipment, dealing with re-entry into school, work, and community, and coping with the psychological effects of this condition on both those diagnosed and their families. Being saddened or demoralized by the diagnosis is appropriate. The inability to move past this grief in a reasonable period of time such that it interferes with relationships and functional living needs to be addressed and treated. Many fear that depression reflects on oneself as an inadequate ability to cope with their diagnosis and feel weak. But it is not a personal strength issue, and depression is very much a physiological manifestation and treatable. Both talking to a psychiatrist/psychologist and medication management can be beneficial, and some studies indicate a synergistic effect of combining the two. Depression can rebound and can at times become more resistant to treatment.”
Below are some resources on mental health for people with rare neuroimmune disorders and their caregivers:
- Behavioral and Psychological Changes in Demyelinating Conditions
- Behavioral and Psychological Changes in Demyelinating Conditions, Part 2
- ABCs of NMOSD – Psychosocial Aspects of NMOSD: Anxiety, Depression, and How to Cope
- The Central Nervous System (CNS) Connection: Understanding Depression, Cognitive Functioning, and Fatigue in CNS Demyelinating Disorders
- Quality of Life: Mindset and Healthy Habits
- How to Manage and Cope with Grief