SLEEP 2025 Patient Speaker: Sometimes how you respond to a comment is more memorable than your actual presentation.

Recently, I was honored to help represent Project Sleep at SLEEP 2025, the annual meeting of the American Academy of Sleep Medicine and Sleep Research Society.

On Tuesday, June 10, 2025, I was honored to present "Navigating Brain Fog: Patient Experiences of Cognitive Challenges in the Real World" as part of a wonderful session "Cognitive Symptoms in Narcolepsy and Idiopathic Hypersomnia: Neurobiology, Functional Impact, and Clinical Research" with Drs. Kiran Maski. Lucie Barateau, and Chris Cano.

Discussion of "brain fog" has increased in the narcolepsy space the past few years, so I worked hard preparing my talk to hopefully bring 3D dimension and a few new thoughts to the conversation. I incorporated a mix of my own story + community insights from Project Sleep's Brain Fog toolkit.

Over 300 people were in attendance, and I felt great as I spoke, reaching a confident, flow state. Afterwards, we had time for a few questions. The first person to approach the mic had a few comments. No problem... I understand how a presentation can spark ideas and enthusiasm in way that's not always easy to express in a question, I don't mind a comment v. a question in theory.

I remember his first comment was interesting. Honestly, I don't remember the second comment (I wish I did) but I just remember how it made me feel, which led me to respond:

"Sorry, did you have a question?"

The commenter said, "No, it was more of a comment."

"Oh okay," I responded, as if surprised but really, I wasn't.

The commenter sat down and we moved on to take questions from other people lined up at the mics. I didn't think much of this moment...

But apparently I'd struck a chord with folks.

I've heard from numerous people that they appreciated this moment and were proud of me for speaking up. I've gotten more comments on this than my actual talk.

Someone suggested it might've been "mansplaining" and asked to quote me if they wrote an op-ed. Wow!

"Man-splaining," "doctor-splaining," or just awkward?

Personally, as a patient advocate, I sometimes feel that I experience some "doctor-splaining." I mostly feel this when I share something from a first-hand patient experience and a clinician responds with something like, "You're right."

As if I should be surprised? Like honestly, "Yeah, bro, I know. I live with the condition, talk to thousands of people living with narcolepsy, and have grown my leadership in the space over 16 years... but gee shucks, glad you agree."

Without giving a specific example for context, this sounds harsh and defensive. The best analogy I can think of, it would be like saying, "My favorite color is pink," and someone responding, "Yes, that's true because I talked to two of your friends who told me your favorite color is pink, so you're right." You'd be like, "Hmm, okay, thanks?"

Every community has odd balls and know-it-alls.

I'd like to believe that this awkward moment wasn't because I'm a woman OR a patient. Scientific prowess doesn't always translate to bedside manner or emotional intelligence.

Plus, I've seen male doctors give awkward comments to other male doctors, and I kind of like it when people are willing to say stuff out loud rather than silently judge or whisper feedback under their breath. Open dialogue is important, and as a sleepy person, I enjoy a little drama at a conference.

Plus, I know sleep clinicians and researchers are amazing, well-intentioned, and working hard (despite worsening federal funding) to advance science and treatment options to help people just like me. I'm so grateful for all they do and I'm so grateful that I was included in this SLEEP 2025 session as a speaker.

Yet I wonder if the doctor-patient power imbalance creeps into these professional settings.

I still wonder if some people believe I have a "bias" that clouds my judgement and ability to have objective opinions that extend past my personal experience to see a bigger picture or broader trends. I wonder if my status as a patient detracts from or adds to my qualifications as a strategic and well-rounded community leader and collaborator.

Of course, I focused my legal education on health policy and gained professional experience in the cancer non-profit space before transitioning to lead Project Sleep full-time in 2018. Last year, the SRS even awarded me their 2024 Public Service Award - a huge honor as I was the first patient to receive one of these major awards.

Yet, even if Project Sleep's programs are developed using evidence-based best practices and in consultation with subject-matter experts.... Even if my row of binders -- overflowing with research on everything from sleep science to storytelling, equity to empathy-- would leave any sleep nerd envious...

Still, as a patient, am I less sophisticated or too biased?

The incredible Dr. Michael Grandner who serves on Project Sleep's Expert Advisory Board has suggested we lead with describing Project Sleep as "patient-led," as if it's a good thing. For me, I'm not sure.

I like to say: Project Sleep is driven by the urgency and passion of lived-experiences, but our initiatives are designed and implemented by multidisciplinary professionals. The second part is equally important to me, because I believe this is something that truly distinguishes our approach and should be adopted more broadly in the sleep space.

Let's bring patient advocacy and social science to the table.

I believe researchers, clinicians, and drug developers should work with both patient advocacy organizations AND social science or health communications experts regularly, especially in efforts to raise awareness or change public opinions or behaviors.

Raising awareness is an art and a science (see this incredible article that really opened my eyes to this field), and there are professionals who do this work. Bringing both lived-experience, end-user, consumer, and patient leadership AND social science, health comms expertise to the table is one of my greatest goals and hopes for the future of sleep.

In closing, I hope this doesn't offend anyone in the process of sharing some musings that I usually keep to myself. I appreciate this community and the opportunity to exchange ideas. This is how we can grow, so please feel free to share any questions and yes, comments and feedback welcome!

This is part 1 of my SLEEP 2025 takeaways! Stay tuned for more.