Mental Health and Rare Neuroimmune Conditions

When it comes to rare neuroimmune conditions, we often discuss the challenges with diagnosis, symptom management, and long-term physical impairments. However, as many of you reading this know, this is just the tip of the iceberg. The impact of being diagnosed with a rare disease on an individual’s mental and emotional health is just as crucial to discuss and study as these other challenges. However, how do we begin to understand and appreciate something as complicated as the relationship between mental health and rare diseases?

Stress. Self-isolation. Hopelessness. Many of our community members have, and still are, experiencing these feelings – sometimes all at once. In a 2017 article by Rebecca Nunn titled “It’s not all in my head! – The complex relationship between rare diseases and mental health problems”, she states that rare disease patients experience anxiety and depression at disproportionate rates compared to the general population. Nunn addresses the length of time between experiencing symptoms and receiving an accurate diagnosis, the significant time and effort it takes to access ongoing medical care, social isolation and invalidation by others, and the person’s sense of identity, to name a few. In a 2018 report by Rare Disease UK, key recommendations included expanded knowledge and capacity for healthcare professionals to address mental health, those diagnosed and their care partners should be directed to sources of support, and mental health access and needs assessment should be given to patients with rare diseases and their carers.

Below are some helpful outside resources we’ve found that can help support your mental health:

At SRNA, we hope our programs, information, and resources help support the emotional and mental well-being of all our members and their families. We know that taking the time to recognize the psychological impacts of living with a rare neuroimmune condition plays a critical role in developing an effective treatment plan. Please visit our Resource Library to view some of our past posts and podcasts related to mental health: