A few months ago, I had the pleasure of sitting down with Fred Diamond for the Love, Hope, Lyme Podcast to discuss Lyme disease advocacy and awareness for the emotional toll that comes with having a chronic illness. It was a special opportunity for us to share our heart and passion when it comes to advocating for Lyme patients and caregivers.
Watch it here on YouTube or listen on Apple Podcasts!
Providing support for this side of Lyme disease and other "invisible" illnesses, including the loneliness, isolation, and overall impact it has on a life, is something that drove me to create LymeBrave Foundation as a place for patients and caregivers alike to know they're not alone in their experiences at a time when this aspect of living with Lyme was little-discussed. It remains our prime mission and my own personal passion when continuing to build awareness for Lyme disease.
We're here to remind you that you always have support and community with you, and if there's one thing I believe in, it's in the strength and resilience of the Lyme community.
My experiences with Lyme disease was a huge part of my life and, as such, became a huge part of my purpose. When I say that I don't want anyone to suffer or struggle as I had--or as I've seen so many of my friends in the Lyme community experience--I mean it with great sincerity. This is why I've been advocating tirelessly since I began to understand Lyme disease when I was diagnosed in 2012 and why I created LymeBrave Foundation.
Through my own healing and multiple relapses I put my own time, very limited resources, and heart into creating a safe space for the Lyme community, including writing blog posts, working with other organizations, giving talks to groups, and building LymeBrave from the ground up (including creating this website and all of its resources). I say this because in the end, it did take a toll on myself in that I had sacrificed my own emotional wellness because I dearly wanted to be of help for others. There's a saying that you can't heal in the same place where you're sick, and this became true for me.
By stepping back, I've been able to help myself, which enables me to better provide for others--both for the Lyme community and in greater context of the next level of my work with my spiritual practice. I'm now better able to hold space for others, and having lived this experience, I can empathize without sinking back into the trauma of my own journey with Lyme.
This is what I wish for everyone and their healing--that you turn that pain into purpose and that purpose becomes aligned with passion. That you become better, that you become more of who you were and who you always wanted to be. That you don't forget yourself and how brave and strong you are just because of illness.
Your illness is a huge part of your experience, that is undeniable, but you are not your illness. Your experiences don't have to hold you back but can propel you forward, even it it's one small step at a time. For almost 12 years since diagnosis and the many more of illness before that, it was always one step at a time. Those steps matter because you matter. Be kind, be compassionate, and be gentle with yourself. And don't ever, ever give up on yourself.
While I've taken a step back from the public eye when it comes to the Lyme community, I still respond personally to multiple emails a week in support of patients and stay up to date in creating helpful resources wherever possible. LymeBrave Foundation also continues to have resources available for the Lyme community. If there's something you'd like to see, please don't hesitate to reach out and let me know!
From the bottom of my heart, I want to thank Fred--along with the multitude of other Lyme advocates who tirelessly make a difference--for his work in continuing in the education and awareness of Lyme disease and for the opportunity to speak on his podcast about having compassion for those with Lyme.
And to the Lyme community: stay strong and always be brave.
With Love,
Susan
LymeBrave Founder