So, what does it mean to be connected to SRNA?
Looking through our community stories, there will always be patterns. There will always be sorrow that things happened like they did. There’s also always some light in the darkness. With these stories, finding connection through SRNA was part of that light, and that’s something we’re proud of.
In regards to how we define connection, I think it’s necessary that we make a choice. I define connection as all the small moments, where I choose to put myself out there, where I take part in what SRNA is doing and enjoy that feeling of being understood and perceived by my community. There’s always the necessity of making the choice to connect, to attend the groups, to have the conversations. It’s easy to just see it, and know it’s there, but still feel like an outsider. No one is an outsider, here.
Leah Killian wrote “I am so encouraged by SRNA and the work that they are doing to raise awareness for rare neuroimmune disorders. Before, it had always been difficult to get answers from doctors or answers to all these questions I had regarding my condition. Through SRNA, I am starting to understand a lot more and finally get some answers to the questions I have been struggling with for years. In addition, I have been able to connect with people that have gone through something similar. Connecting with people brings hope and I am so appreciative for the conversations I have been able to have through SRNA.”
George Huhta wrote “Since SRNA has been such an important resource in my NMOSD journey, when I saw a request for volunteers, I quickly raised my hand. I look forward to helping SRNA with communications projects to help raise awareness for rare neuroimmune diseases and to support and inform those living with these conditions.”
Laura Murray wrote “With extreme paralyzing pain leaving me spending most of my day in bed, I turned to the internet. I searched “#transversemyelitis” on Instagram, found the SRNA, and things started going in a better direction. I found videos from a physiotherapist at an SRNA conference, and she said the most important thing to have in your evidence-based physiotherapy rehab was hope. I was able to attend an online meetup where I met other people who have been impacted by rare, life-changing medical conditions.”
These three people made the choice to connect, and I made that same choice, and it’s not one you ever regret. I’ve never felt safer than when I’m with this community, where we more fully understand each other. Being seen is not something you have to produce by explaining yourself again and again to people who have no context for your condition; instead, it’s inherent to being connected with SRNA.
No one is alone in this.
