Clusterbusters: The Importance of Hope

After two years of meeting virtually, Clusterbusters had an in-person conference. My brain was full of questions and concerns about traveling, meeting others, and fitting in. However, all of that melted away as I was embraced by a community that understands. Getting a hug from someone I’ve known online for a few years now and who faces cluster headache disease is an amazing experience. Seeing the way people were uplifting, giving words of wisdom, and embracing each other was empowering. My family has exponentially grown from that weekend.

What were my thoughts going into the conference?

Going into the conference, this quote was on my mind and in my heart. “You’re not a victim for sharing your story. You are a survivor setting the world on fire with your truth. And you never know who needs your light, your warmth, and raging courage.” — Alex Elle

What information did the conference share?

The conference was packed full of information from doctors, paths of advocacy that needs to be pursued, and patient journey stories. Doctors explained current treatments and the current clinical trial data. Dr. Schindler shared her trial data from the psilocybin trials. The data brings me hope. On Sunday, we had a new set of sessions specifically geared toward how we advocate for treatments in our community, especially in the realm of psychedelics. Dr. Joanna Kempner’s talk about how Clusterbusters has been a grassroots, patient-driven organization from the beginning highlighted where the advocacy has been and where we can go in the future.

What was my role in the conference?

In addition to the lineup of speakers, two patients are asked to share their patient journey. When I was asked to be one of the two, I was told patients really look forward to the patient speakers. I believe it's empowering to share stories and gives hope to those listening. So I took my own words of advice. The experience was surreal, and I’m excited I was able to share, but also I was excited to see how my story resonated with others and to hear their stories in the hours and days that followed.

What message did I convey in my speech?

I’d like to share a few things I said during my talk because I believe them so passionately, and I hope it will give you the encouragement you may need to share your story going forward.

“Every single person in this room has a story! Some of you experience cluster attacks, some of you are loved ones of someone who has cluster attacks, and others of you are medical providers, cheerleaders, and advocates! Every single story is important. We are like pieces of a puzzle, and the more stories you hear, the more clear the picture becomes of this disease we all battle. But, even more, the ways we battle the beast - we all have differences and what works for one of us may not work for another. So again, the more stories you hear, the more chance you might hear something that you can learn and try yourself.

It wasn’t just one story that gave me hope, it was hearing so many stories that gave me hope. I was nervous, and some of you probably remember all the questions and concerns I had as a newly diagnosed patient. I appreciate the patience I was given - I felt I had a community rallying with me. While you’re here, listen to the stories. If you haven’t told your story, I challenge you to find someone to tell your story to while you are here. It’s empowering and validating. Your story matters!”

What were my final thoughts?

One of the most profound comments I heard was, never allow cluster headache to stop you from living. Grab your tank and keep on living.

Has someone shared a piece of wisdom that has made a difference in your journey?