Becoming a PMDD Advocate
On June 18th, 2020, I hit my breaking point with premenstrual dysphoric disorder (PMDD). It was a Saturday, another disaster of a day feeling like I was drowning. After a volatile morning, an exhausting trip to the Department of Motor Vehicles due to a miscommunication was the straw that broke the camel's back. I was rage-filled and spiraling. I found myself outside the local hospital pleading with my husband not to admit me to the emergency department for the suicidal ideations that had arrived like clockwork three days before my period. My life had been falling apart in two-week intervals for years. And the little time I spent treading above water was spent picking up the devastation of the last luteal phase. I was so desperate to feel better. I decided I was done with the cyclical nightmare my disorder caused and I decided that day to pursue surgical menopause.
Fast-forward. Over six months, I saw a series of 5 OB-GYNs who were dismissive, hadn’t heard of PMDD, or insisted that I hadn’t tried the right birth control yet. Finally, by way of what I can only assume was divine intervention, I found a provider willing to work with me. On February 2, 2021, I had a bilateral hysterectomy with salpingo-oophorectomy, an advanced and drastic treatment option for PMDD that I believe saved my life.
This blog is actually not the story of my PMDD journey but rather my experience of being a member of the first IAPMD Patient Insight Panel (PIP). This journey began in January 2021 when I applied to join the panel to help bring the patient voice forward in PMDD research.
I was ecstatic when I was selected as a member of the 30-person PIP. I felt compelled to use my experience to advance the knowledge on PMDD. But I would be lying if I said that any part of it was easy. The past eight months of my life have been heavily devoted to this project and thus the part of myself that I like the least, the part that carries the shame and guilt of my disorder. Truly it was one of the most emotional experiences of my life. More reflective than the years of therapy I have had with various psychologists and psychiatrists. There were a series of surveys with open-ended questions about our lived experiences. It touched on a lot of the issues that are triggering to me, such as our history of suicidal ideations, medical gaslighting, and misdiagnosis. There were confidentially recorded group sessions which allowed me to open up to my peers and allowed the discovery of additional shared symptoms. I left most surveys and group sessions with a full-body visceral response in the form of hives. I don’t share these personal anecdotes to dissuade someone from participating in the future, but instead to help prepare you for the emotional work ahead.
Our group of 30 was paired down to a group of 10 patients that would present our insights at the 2021 PMDD Community Coalition Roundtable in July. I was honored to have been selected. We spent additional hours preparing the presentation of the findings, carefully curating what we would express to the stakeholders and attendees, many who were the leading clinical and research experts on PMDD. Finally, the lifetime of living with this disorder would pay off as we brought the patient voices to the event.
I was really nervous. It had been a year of self-discovery, a lot of self-healing, and a tremendous amount of hard work. I wasn’t afraid to present the information because I knew how our patient-collective voice deserved to be heard. I was nervous that we would once again be dismissed. But today as I write this, two weeks later, I honestly believe we have been heard, which is something we don’t experience often enough as a patient population.
I firmly believe that my participation in the Patient Insight Panel was some of the most impactful work I have ever contributed to, though a very emotional journey too. I would like to personally thank everyone who was involved in the process, from the organizers to my fellow PIP members: my experience wouldn’t have been what it was without you. I’m so very proud of each one of us.
MEET HEATHER
Heather Williams is a mom, wife, clinical research coordinator, and PMDD Advocate. In 2021, she made a pledge to use her patient experience to help others suffering with PMDD. She lives in Ohio and enjoys scuba diving, traveling, and spending time with her family.
Follow Heather on Instagram @heather.pmdd