My name is Christine Cohen, and I have trigeminal neuralgia, geniculate neuralgia, occipital neuralgia, Eagle’s Syndrome, and Arnold Chiari malformation. Each one of these medical conditions is considered rare. During my search for answers and treatment, I often felt alone, frustrated, and inadequate.

Throughout the years, I found some of the best information and advice not from the medical community but from people who have the same conditions as I do.

The responses I received to questions posted on social media came from complete strangers, but they still took the time to offer suggestions, advice, or even just words of support. These were such small gestures, but knowing that I was not alone and having a community to turn to meant quite a lot to me. I was able to use the advice given to me to research my symptoms and better educate myself as a patient. I know firsthand that any small gesture like this can make a large impact, but none have stuck with me more than the connection I made with a fellow patient through an online support group.

In 2011, I was struggling with new, unexplained symptoms when I read about TN. One woman took the time to reach out to me privately. She told me about her experience with TN and described her path to a diagnosis as well as her treatment. After that, we began communicating regularly. She was always available to answer my questions and offer suggestions regarding communication with my doctors. As she had already undergone a successful MVD procedure, she was able to provide me with important information regarding this surgery.

Her perspective as a patient who had a successful MVD made me feel more confident in my decision to undergo the same procedure. Her support during my recovery was invaluable. Being able to converse with someone who knew exactly what I was going through and exactly how I would feel after surgery made all the difference in the world.

In all our conversations, I tried to impress upon her how grateful I was that she took the time to talk to me. Every time, she insisted she was happy to do what she considered a small thing and that no thanks were necessary. While she may not have thought she was doing very much, her advice and support really changed my life.

Her efforts inspired me to become a Peer Mentor and Support Group Leader with the Facial Pain Association so that I have the chance to do for someone else what she did for me.

I now have the opportunity to make those small gestures, like taking a phone call from a patient or hosting the Support Group Meetings, that can hopefully make a big impact.