Deep thanks for interviewing Esmerée, Aileen, and Jessamyn and sharing their endometriosis stories.They’ve been courageous to share such difficult and intimate experiences. Over the years, when hearing the details of your experience, it left me feeling disappointed in our healthcare system that a condition so severe and so common didn’t have real solutions.
Hearing the stories of these three women only amplifies my disappointment. Although the interviews gave them the chance to finally tell their stories, they’d all had challenges being heard and believed by family and health care providers. None of them particularly felt ‘healed’ in any sustainable way and clearly we heard examples of where they were not honored and their dignity not preserved during help-seeking encounters. These three women highlighted for me how the standard for being heard, healed, and honored for endometriosis patients may be very hard to meet. It’s not that all providers are purposefully avoiding addressing those needs, but rather it’s because endometriosis itself presents in ways that our health system is clearly not designed to address.
As you were working on the interviews and posts, we discussed how heartbreaking it was for you to hear what they’d gone through, especially as their experiences were similar to your own. You also mentioned that each woman saw the opportunity to share her story to help inform others, but discovered in the process that they themselves felt some relief from having their stories heard.
I remember sitting in our college dorm rooms years ago talking about these topics — often realizing we had nobody else with whom to discuss these challenges, and how relieving it was to be able to share with each other. The three entrepreneurial women you interviewed amazed me with their creative problem solving and impressive navigation of their relationships, schedules, and lives while very few options were available that could reliably address their symptoms and experiences.
I’m blown away by each woman’s journey to get the help necessary to simply function throughout a monthly cycle and how precarious the solutions were across their lives. For me, with a relatively traditional cycle, there are highs and lows to manage that seem burdensome at worst and inconvenient at best. Imagining anything worse, as well as needing to communicate with friends, family, and coworkers about any bodily function sounds overwhelming.
Getting my head around the stories and experiences was a bit more awkward and uncomfortable than I expected. Hearing the realities these women face and bearing witness to someone else’s pain — even second-hand, took a bit of getting used to. It’s hard to look pain in the face — it makes me, and probably most of us, feel helpless.
I’ve worked in women’s health services on and off for years. I was sure I could handle any story, but your interviews gave me pause and the chance to really start to hear the stories differently, not just as a litany of symptoms, but to hear the stories in such a way that I could truly understand the experience, to understand how a woman’s chronic health issue affects her quality of life and to hear how isolating it can be to live with chronic pain, even if predictable on a monthly basis.
I feel deep empathy for women dealing with endometrial pain and symptoms — diagnosed and undiagnosed — because of this new understanding. When I had my two kids, I experienced postpartum depression and through it I learned, from watching those around me, especially my husband, that it takes unexpected effort to live with and support a person in chronic distress. The partners, family, and friends of women with endometriosis likely have equally important experiences and stories we should hear.
Most of us believe our health care will be directed by health-care providers, but the fact is, for these women, they needed to be the problem-solvers, finding and having agency where the health care system failed to provide true solutions for their chronic debilitating pain and they needed to enlist those around them to be advocates for when they are incapacitated; they needed to do that to simply function with predictable frequency.
The people who can truly hear these women’s stories are critical — those are the people who can and will honor women’s experiences. I think that as we progress with this project, it will be meaningful to delve deeper into what it’s like to be the partner, parent, or friend of someone experiencing pelvic pain and endometriosis. I’m curious to get more perspectives on the whole picture and I expect the voices of family, friends, and community can be a source of solutions — or at least support — for women with endometriosis as well.
The whole reason we started this project together is that we’ve witnessed each other’s health journeys and I’d like to explore the experience of partners, friends, and family if we have the opportunity. I think it will be helpful for us to interview the witnesses to women’s experience.
Thank you for completing the interviews and sharing Esmerée’s, Aileen’s, and Jessamyn’s stories and for exploring the power of sharing women’s health stories with me — your posts honor their experiences and your own.
With gratitude and admiration,