I will never forget the first time I dialed Claire Patterson’s number back in 1990. She sat at her kitchen table, laying the foundation for an organization that would go on to change countless lives. For three long years, I navigated the dental world, enduring every procedure imaginable in a quest to alleviate my pain, until finally, I was referred to a neurologist. Claire was the lifeline that linked me to experts and a wealth of educational resources. However, the treatment options available were primarily tailored to classical trigeminal neuralgia, while I grappled with the unique challenges of atypical facial pain.
At the time, I was 33 years old, raising two young boys, soon to become three, with a loving husband by my side. I was grateful for the resources the organization provided and for the connection with Claire because I had someone I could call. Following a painful experience at a support group where someone who was hurting could not acknowledge my pain, I pulled back from the community but continued to receive resources in the mail. Around 2008, this started to change, and the organization began to expand to support all people living with neuropathic facial pain, including me.
Today, I manage my health holistically, doing everything to make it the best I can—laughing, exercising, working, enjoying my family and friends, and coping with the help of my evening red wine or medical marijuana, specifically gummies. But my journey with facial pain has been relentless. I have undergone numerous surgeries, experimented with a vast array of medications, explored alternative therapies, and participated in a clinical trial. In my case, and I suspect in yours, there are no quick “fixes.” I have tried every option available to me, and we need more solutions, but the science is not there yet.
Throughout my journey, my career as an attorney has served as a welcome distraction. Living with facial pain is something I have kept private, only disclosing to my closest family and friends. As I contemplated sharing my story in my leadership role as the managing partner at a law firm, a friend offered me sage advice, reminding me that “you can’t compare pain, it’s not a contest.”
As I shared my struggle to help others cope with the pandemic and their own medical issues, I found my story resonating. Today, I am proud to serve as a Facial Pain Association (FPA) Peer Mentor, connecting individuals in need with the care and support they deserve.
Even from a place of gratitude, it gives me pause to think about where we are. I had hoped that from 1990 to now, we would have more treatment options. However, it is 2023, and a “fix” remains elusive. Many conditions lack simple solutions, and facial pain is no exception. However, we deserve more options, better treatments, and greater hope. Whether you are battling classical trigeminal neuralgia, atypical facial pain, or another variant of neuropathic facial pain, the goal is universal—to live life to the fullest and navigate the challenges that come with the pain. I am grateful to focus on my life while the FPA tirelessly strives to move us forward.
I give to the FPA with confidence knowing that I am investing in our future and there is nothing more hopeful than that. Please consider making a gift today.