This blog is adapted from a story told by PMDD clinician and scientist Dr. Tory Eisenlohr-Moul, at the 2021 IAPMD Roundtable - a powerful reminder to all professionals in the PMDD space and a tribute to the patients who lead the way in making change.

As a postdoctoral fellow in 2016, I was invited to attend IAPMD’s second conference on PMDD in Philadelphia. 

In being invited to this conference as a scientist, I prepared for it like I would any other conference - I made a slide deck with my experimental findings and my thoughts about them, I wrote up this jargon-heavy script that highlighted the results that I thought other scientists would find interesting, I booked my hotel room - I was ready. I was excited. 

On the flight over, I did what I always do; I worried about whether I would sound smart and whether other scientists would think that my work was valuable. I needed a job in a few years after I finished my postdoctoral training, and conferences were a young scientist’s proving ground.

However, when I got my seat and the conference program started, I immediately knew that my slides would need revising. 

Usually, at a scientific conference, I’d be sitting next to other scientists who were all frantically checking their emails and working during the talks. But instead, I was sitting next to a patient and her mother. The patient’s mother told me that she was there to support her 45-year-old daughter because she could not travel safely alone during her luteal phase because of the intense suicidal thoughts from PMDD. 

The program was also different. Instead of starting with scientists giving talks about their research, the first three speakers were all patients. They approached the podium one by one, with tears in their eyes, sharing their experiences with voices shaking. They talked about repeated suicide attempts, broken relationships, and lost jobs. They also spoke with great emotion about how little help they had received from doctors and other healthcare providers and how little research was available to guide their treatment, especially when initial SSRIs and hormonal contraceptives hadn’t worked for them. There was a strong sense of hopelessness and a clear theme of feeling betrayed by the medical and scientific communities. And here I was, an eager member of the medical and scientific communities.

After that first morning, I knew that my talk needed an overhaul. I spent the lunch hour frantically revising my slides, removing jargon, trying to better center the patient experience as I understood it. 

I gave my talk, and it was a completely different experience than I was used to. When I returned to my seat, next to the only other junior scientist who was in the room, Liisa Hantsoo, we shared a knowing glance that what I had just done was very different from the talks that we usually give at conferences. It was scary and new, and I had to be more vulnerable about why I was so passionate about my research. 

The major impression that I took out of this entire experience was that I was a guest in this patient-oriented space at IAPMD and that my seat at the table was contingent upon my respect for the patient experience. This organization that was built out of shared desperation and trauma was clearly providing a lifeline for so many patients attending the conference, as well as thousands more online. And they couldn’t, just to placate some young scientist's ego, give up their focus on the patient experience.

And now, five years later, as the Clinical Advisory Board chair at IAPMD, I try to remember that I’m still a guest at the table and that respect for the patient experience remains a strong precondition for working in this space. Honestly, it’s also the thing that has taught me the most about PMDD and has been the impetus for several of my NIH-funded trials, so it has benefitted me as well.

So, to all the professionals here in this space, remember this. We’re guests here, not just because this Roundtable today was funded by a patient-centered grant, but because it was in part our collective professional failures that lead to the creation of IAPMD. Being invited now back into this patient-centered space that they’ve had to create for themselves to protect one another is a huge privilege that we must earn again and again through respect for the patient experience. That doesn’t mean that you can’t ever disagree with a patient, and it doesn’t mean that you might not have special knowledge that a patient sometimes might not have, but it’s the kindness and respect for patients that is so obvious when it’s there and when it’s not there. 

At IAPMD, the patient experience has always been the center out of necessity. As guests here, we can earn our place at this table, a privilege, by being respectful and remembering that patients are at the heart of all we do.

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MEET TORY

Dr. Tory Eisenlohr-Moul is the chair of our Clinical Advisory Board and an invaluable part of the IAPMD family using her research and clinical expertise to help guide the organization. As a Clinical Psychologist and scientist, she’s studying how the menstrual cycle influences emotions and behaviors in hormone-sensitive patients. She’s especially interested in how impulsive and dangerous behaviors change across the cycle, such as suicide attempts, substance abuse, and verbal as well as physical conflicts. Tory is an Assistant Professor of Psychiatry at the University of Illinois at Chicago. 

Follow Tory on Twitter @eisenlohr-moul | Learn more about Tory’s research