Finding Life-Changing Support Through Patient Events

Personal Perspective: Peer-to-peer events help me cope with autoimmune encephalitis.

Reviewed by Michelle Quirk

Key points

• Finding an organization that focuses on research, patient support, and education can be life-changing.
• Gathering with others can provide emotional support, reduce anxiety and depression, and increase knowledge.
• Patient gatherings also provide support for symptom management, patient empowerment, and caregivers.

by Jackie M. Stebbins, Esq.

It seems unfathomable that a person could start the day with a 10-million-dollar professional career ahead of her but have it erased by the day’s end. It’s scary to believe that you can be diagnosed with a life-changing illness that you’ve never even heard of. It’s heartbreaking to learn that your own immune system can deviously attack your brain until you’re incapacitated and unable to participate in your own life as a 34-year-old lawyer, wife, and mother of two.

In my case, it’s not hypothetical. I’m an autoimmune encephalitis (AE) survivor, and that happened to me in May 2018.

In a matter of days, I was taken from the only world I ever knew and thrust into the grind of a devastating and little-known neurological disease with complications and chronic health conditions that will follow me for life.

Adding further insult to injury was that I was in a state of cognitive deficiency while I tried to understand my diagnosis, and I was entirely unfamiliar with it. I had never heard of AE. (It took me years to discover that my lack of awareness wasn’t novel. Per Encephalitis International, nearly eight out of 10 people in the world haven’t heard of encephalitis.)

And in what felt astoundingly punishing, at the time of my diagnosis, I did not know a single other human who had AE. In my early days, all I had was limited knowledge of Susannah Cahalan and her bestselling book about her journey with AE, Brain on Fire. But I didn’t know the famed author and didn’t believe she could possibly know me. (I also declined reading her book, because it felt too close, and I hoped to someday pen my own story. I only read it years later when my book, Unwillable, went to publication.)

Simply put, encephalitis is inflammation of the brain. But what’s harder to express is how it shattered my life and my career. It broke my brain and my heart, and I felt like I had nowhere to turn. My illness’s brutal attack on my brain was bad enough, but the absence of a nearby community of others with whom I could empathize was devastating. And, unfortunately for me, it took me a while to locate my people, which only added to my struggles.

After nearly a year of isolation and feelings of hopelessness and loss, I discovered the global leader on encephalitis, Encephalitis International. Once connected, I began attending their online conferences and virtual meetups with other survivors. Finding my home in an organization that focused not only on research and medicine but also on patient support and education was life-changing. It was through their programming that I came to the powerful realization that I was not alone in my pain and uncertainty and that others were there to help. I couldn’t wait for the day I could attend an in-person patient event.

It took me a while to get to that first live event (ugh, COVID), but the reward was grand. On September 22, 2023, I attended Encephalitis International’s “My Brain and Medicine” event at the Univeristy of California, San Francisco. Nearly 100 physicians, scientists, patients, caregivers, family, and friends gathered in the name of encephalitis. I learned from experts, met new faces, shared stories, gave hugs, and held hands through tears and smiles. And I cannot emphasize this point enough: For the first time in my life, every person around me knew about encephalitis! Many of us had come a long way from the days of uncertainty. We felt embraced and a strong sense of belonging—so much so that we took a large group photo to commemorate the day.

Encephalitis does its very best to rob us of personal connection, so we must diligently work to overcome its detrimental effects. It’s why I believe that patient events are crucial pieces of our medical puzzles.

But it’s not just “encephalitis people” who stand to benefit from patient events; patient gatherings also aid those who suffer with other maladies, including neurological conditions, cancer, autoimmune disorders, and more.

A simple PubMed search shows that gathering with similarly situated patients is worthwhile for (1) emotional and psychological support, (2) reducing anxiety and depression and learning coping mechanisms, (3) social connection and knowledge, (4) symptom management and treatment, (5) patient empowerment, and (6) caregiver support.

In my case, not only did I not know any other AE patients or survivors upon my diagnosis, but I also live in Bismarck, North Dakota, where the closest metropolitan areas are states away. Thankfully, Encephalitis International organizes many patient events throughout the year, providing everyone the opportunity to connect and share both in person and virtually.

In July 2024, I was invited to speak alongside the organization’s CEO, Dr. Ava Easton, about the power of patient events at a “My Brain and Medicine” conference in Cleveland. However, because of the global airline IT outage, I was unable to fly out of North Dakota. But with the aid of technology and helpful hands willing to pivot, I addressed the audience from my home office. It was wonderful to share in the success of the event, even though I was many states away.

Based on my personal experiences, it is my humble opinion that patient events are vital for encephalitis patients because the lack of awareness surrounding the illness and the complexity of its diagnosis, treatment, and recovery means that our group isn’t one to receive a lot of mainstream attention, which leaves us feeling forgotten.

On top of that, our illness is invisible. Our brains are sick, but that may not be readily apparent to others. Most of us have residual medical effects and other complications from a life upended. Many individuals diagnosed with encephalitis do not receive a commensurate referral to a local support group or peer-to-peer services. Thus, we feel like we carry the scars of our journeys alone, and that burden is overwhelming.

Although significant scientific and medical progress has advanced our understanding of encephalitis, and while Brain on Fire has achieved global recognition, much work remains regarding rapid and accurate diagnosis, standardized treatment, recovery metrics, and, hopefully, one day, a cure.

Specialized clinics and hospitals, various therapies, and counselors are vital for those affected by encephalitis and others facing serious medical diagnoses. But the need to bridge the gap between science, medicine, and people is also critical for those seeking holistic healing and empowerment. And the only way to fill that void is through patient events.

I’m so thankful for Encephalitis International’s commitment to its cause and service to all. It is my hope that other advocacy and research organizations for myriad illnesses follow Encephalitis International’s lead and recognize the crucial role patient events can play.