Never Alone: Reflections on Community and Mental Health
“In difficult times, social connections act as a protective shield against the harmful effects of stress. A series of experimental studies from the past two decades provide evidence that receiving social support (compared to no support) can buffer the negative impact of stressful events.” — World Happiness Report
May is Mental Health Awareness Month. People diagnosed with rare diseases experience anxiety and depression at disproportionate rates compared to the general population. A common symptom of rare neuroimmune disorders is depression, and many of our community members experience the effects of depression following diagnosis.
The good news is that no one has to experience these difficulties alone. Support and hope can be found by joining a community of people who understand what you’re going through. Just listen to these perspectives from people living with ADEM, AFM, MOGAD, NMOSD, ON, and TM:
Chyann
“Being apart of the SRNA community helped me get out of the dark and lonely mind space I was in during my month long hospital day. I thought I was the only person with MOGAD, no one even doctors seemed to understand or relate to me. I love my fellow MOG friends!”
Sara
“In the past, I have been a bit of a private person when it comes to my experiences with TM. However, I have been a part of the SRNA community observing and looking through resources from afar for many years. Having never met anyone who shared my experiences, finally finding this community that spoke about my experiences and symptoms was like finding a gold mine. It helped me, and my family and friends, to better understand things. I remember reading countless testimonies and being able to relate to people. Through SRNA, I am realizing how much greater of an impact we can have if we just use our voices and share our experiences.”
Pierangelo
“Seeing SRNA’s stories about people struggling with the same situation gives me a lot of hope and motivation and that’s when I know I’m not alone in this. Every day I feel part of this family and community, our fight is joining us.”
Janelle
“Being a part of the rare neuroimmune disorders community has brought more clarity and connection to my life. When I was first diagnosed with TM 11 years ago I met people with similar diagnoses, but never felt understood. Then I went to my first 3 day symposium in 2019, I met a fellow TM buddy, Christina, who also used a scooter as her primary mobility aid. Since then I’ve continued to grasp a better understanding of our community and myself living with a rare neuroimmune disorder. There are so many other huddles I’ve had to get through while trying to live a somewhat normal life and achieve my professional goals, the support and understanding helps me stay motivated to keep going.”
Have More Questions?
Your primary care physician can help you with next steps if you are struggling with your mental health, including deciding if medication, therapy, or a combination of both will be helpful. If you are experiencing an emotional or mental health crisis and live in the United States, please call the National Suicide Hotline at 1-800-273-TALK (8255), or text the Crisis Text Line by texting “start” to 741741. If you are experiencing an emotional or mental health crisis and live outside of the United States, please Find A Helpline or call your local emergency services.
May is ADEM Awareness Month! Ashley was diagnosed with acute disseminated encephalomyelitis in 2007. Her journey has been marked by resilience and the relentless pursuit of better quality of life, demonstrating the powerful impact of determination and support within the SRNA community. Learn more about Ashley’s story here, and get involved in raising awareness for ADEM here.
