Reflecting on Three Women’s Stories

Deb,

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,

Liana

Happy and Healthy 2018!!

Hello Readers –

Thank you so much for tuning in to Heard. Healed. Honored in 2018 for more insight into women’s health experiences. We hope that this year is off to a great start for you!!

This project started during 2017 as a labor of love in an effort to share the power of supportive friendship and it’s impact on health since we’ve found it so beneficial in our lives. We plan to continue the women’s health storytelling and to grow in 2018 with a more regular publishing schedule for the blog posts, along with a podcast where you can benefit from hearing women’s voices discussing being heard, healed and honored and the stories of women’s health experiences

We’ll be piloting an online community and journaling project in the first half of 2018 as we have seen the benefit of sharing stories and the healing that can come from being in community and having that support. More to come on what that looks like.

We will be picking up Deb’s story over the next few days. The thread will begin to include the experiences and voices of other women Deb has interviewed to provide more clarity around the power of the endometriosis experience to shape and impact women’s lives.

2018 is a year of growth for Heard. Healed. Honored., and we’re glad you’re along for the stories and the community!!!

In happiness and health,

Deb and Liana

 

Telling the Difficult Story

Dear Deb,

Thank you for writing about finding your voice and being heard by healthcare providers. I think of you as someone who is always able to articulate your perspectives so easily. Your letter showed me that even people who can articulate their thoughts easily don’t necessarily have an easy time doing it in situations like this.  I know from working in healthcare that communicating when we feel vulnerable is complicated and I’m sure that has impacted your experiences as well. Being in a healthcare setting at any age, with even the slightest, most benign health condition, makes us feel vulnerable. In addition, in a medical office we feel like we’re not experts about our own bodies and that creates a power dynamic that can go unacknowledged.

Geez!! The Statistics!!

I appreciate and am appalled by the statistics you shared about endometriosis. The incidence of endometriosis and the complexity (and journey) of reaching a diagnosis, in particular, struck me as completely staggering. The idea that 1 in 10 women are diagnosed with endometriosis and that it takes on average 10 years (10 YEARS!!!) from symptom onset to diagnosis, amazes me. These statistics show that whether or not we acknowledge it, the experience of endometriosis shapes many women’s lives. If, generally (statistically, on average), a woman is experiencing symptoms during her ‘average’ menstrual cycle,, then that is a minimum of 10 weeks out of the year that she has, according to the Mayo Clinic , anywhere from mild gastric discomfort to debilitating pain or excessive bleeding.  Over 10 years that means that a woman can be experiencing these symptoms for a cumulative 2 years. That is a ridiculous amount of time being uncomfortable without reliable answers and more importantly, without reliable solutions or safe options for relief. Amazing.

Talking about Pain
When I think about the idea of spending that amount of time uncomfortable, let alone, experiencing uncontrolled pain, I go back to the theme of being heard. I know that I, as your friend, heard you loud and clear when you were experiencing these symptoms, but I wonder about how health care providers heard you.

I would appreciate if you could say more about the discussions you had with health care providers specifically regarding pain. I know that when I’ve had injuries, which is the best comparison I can describe for a chronic pain experience, I’ve found it hard to articulate the experience and I tended to downplay it. Depending on who I am talking with, the way I describe pain can vary. I notice I tend to understate what’s going on when talking with my husband, but when talking with my sister, I feel like I can be more clear, because we (as women, as siblings, as close friends) have a different understanding about our bodies. It see how this dynamic could play out when communicating about pain and discomfort to health care providers. A more sympathetic listener probably gets a more complete and accurate picture of the experience, while a provider who seems to be short on time, unfamiliar, uninterested, or distracted, would likely get less detail and a less clear picture of the pain. Unfortunately, that less clear understanding could lead to a less effective solution, leaving you with less trust about the recommendations, no matter what they would be.

Editing Your Pain Story
You and I both know that it doesn’t make perfect sense to edit the experiences we communicate to health care providers, but that doesn’t stop us from doing it. I’m curious to know, in your experience, what were the situations that made you more and/or less precise when it came to describing your pain or discomfort with health care providers? Do you think there were people who were easier to talk with and why? In situations where it was difficult to get your point across about what you were experiencing what happened and how did that impact the outcomes? Were you still able to get what you needed to address  your pain and discomfort?

Will you dig a little bit deeper into your experience to explain how you communicated with health care providers about the physical experiences you were having to help me understand the different ways that providers heard you and how you found them helpful or you understood that they just weren’t hearing you? I think this will lead us to understanding where along your journey you found healing and how providers honored you and treated you with dignity.

I am also thinking about your experience from the point of view of knowing that you are an articulate, not-shy, self-aware, white woman seeking health care services. Even having all of those factors working in your favor to make it so that you are able to be seen and heard within the health system, I know you have had challenges getting your needs met. As you and I have discussed, after seeing what you’ve gone through, I can’t help but consider the experiences of women who may not be as able to communicate for whatever reasons, or who are in any way underestimated by healthcare providers, and I imagine that their paths are only that much more complicated.

Thanks for your willingness to be open and share your story, I believe you are by no means the only one who has faced these challenges. When we started this project we interviewed other women. I’ll be curious to hear from you if any of the women you spoke with had similar experiences that they shared with you.  I believe your openness, and theirs, can help others understand the impact of endometriosis.

Always,

Liana

What a Journey!!

Dear Deb,

Goodness gracious!!! I mean, I do remember many inflection points of the story and I knew most of what you went through, but when you put it out there in the order of events – from period to hysterectomy – whoa!!!! What a flippin’ journey, lady!!!

There was lots of pain, many lost days of school and work, a ridiculous amount of effort to figure out a livable (and tasty) diet and a bit of a wounded heart. My heart goes out to the girl, the young woman who I met in college and the friend I have had in you, for having needed to be so brave and patient. It sounds like it’s been exhausting and an exercise in endurance. What amazes me is that you have thrived despite this path and its uncomfortable and difficult days.

I’ll have to admit that working in the healthcare field clouded my reading of your story.  I kept thinking, “Who were these doctors you went to?! Were they always listening for the right information?! What is their experience with pelvic pain, complicated periods and endometriosis? Would they think they’d made the right choices if they could hear your story now?”

Your Voice
The reality is that when you were an adolescent, I bet that like any of us in our evolving adolescent bodies and brains, the LAST thing you wanted to talk about was taboo subjects like your period and your ‘development’. It was quite likely that you were just trying to figure out the right words to express what was happening, not thinking about developing a voice for advocating for help and defining for yourself what help should look like. You didn’t know what parts of the experience were ‘normal’ and what parts weren’t. That’s a tough starting point.

I know from experience that the people in our healthcare interactions who are often best at hearing patients are the nurses and nursing staff, as opposed to the doctors (I know this is a generalization – there are pretty fabulous docs out there – but nurses as a general rule rock at listening). The first nurse you mentioned in your letter was your school nurse in 8th grade. What you couldn’t have known was that you probably weren’t her first adolescent girl in crisis and she seemed to hear you without you needing to say much, whereas I expect that plenty of the other providers on your journey were not quite as adept at listening.

The way you navigated the system to get the care you needed probably changed over the years and your voice developed from that of an adolescent to a woman advocating for care, pain management, surgical solutions and information.

Listening
It struck me that your account of the experience included references to different types of listening. First and foremost it was you listening to your body. But beyond that you move from your mother listening to you, to you listening to the experience of others and finally, to health care providers listening to you.

The difference between hearing and listening stands out in what you shared. One example is in your discussions with your doctor after the operation to remove the ovarian cysts. That was the juncture when the endometriosis was confirmed. I remember that was around when my kids were small and you were still planning to have a family. I wonder if your GYN doctor really was hearing your desire to start a family and if she considered alternative therapies at that time.

Over the course of the journey, your health goals were to live without pain, maintain your plans for children and to manage digestive issues that were exacerbated by your diagnosis. You seemed to cobble together answers about how to live those goals. I’m convinced that worked more because you began to find the balance between listening to healthcare practitioners and listening to your body and your own wisdom.

In hindsight, it’s easy to question the extent to which providers, especially during the early years, adequately heard you and developed long-term solutions to help you get comfortable enough for activities of daily living, in accordance with your life’s aspirations for a family, or if they focused primarily on solving the immediate symptoms.

Heard So You Can Be Healed
Ultimately, I am impressed by your faith in the health care system as you continued to turn to doctors and surgeons for answers. I know that there were times between the instances you recounted in your letter when your faith in the health system was waning. You tried a few alternative healing methods over these years and I know that you had some success with pain management working with a chiropractor.

I understand that your hysterectomy decision was difficult to come to as it was a decisive and symbolic step. I know it was a carefully considered decision and you were able to make it with the support and care of your sweet husband and family. I appreciate that your doctor was consultative and could talk with you and hear you through the process, so that you were at peace about the decision.

That said, the surgery was clearly no picnic and the road to recovery has been, of course, longer than desired. There were symptoms that you were never told about until you had them, though they would have been great to understand ahead of time.

We’re old enough to have our self-advocacy impacted by the arrival of the internet. We started getting the chance to browse the web during our early ’20s and over the years it has exploded with information, but not always as informative as we’d hope and not always consistent with what doctors would advise. I still wonder, if a young woman today had the symptoms you experienced, would she end up with a different endometriosis narrative. If so, some of that will be due to the access to information that was not available to you.

So Others Will Be Heard
When you reflect, Deb, on your conversations with various health care professionals through your journey, what are some highlights of when you thought providers were really hearing your story and using that information and understanding of you to help come up with solutions? How would it have made sense for health care providers to assist with the related gastrointestinal and food sensitivity issues? Did you find that the chiropractors or herbalists that you worked with approached your symptoms and the interactions differently than the physicians and physical therapists that you saw?

Thinking of a young woman today who is living with endometriosis or having the first signs of problems, how can she benefit from hearing your story? Are there ways you hope that her health care providers hear her so that they can honor her near-term and long-term goals and help heal her to their best ability? Are there ways to talk about abdominal pain that help get the point across?

 

As I have been writing back to you I have had in mind the Japanese pottery tradition of Kintsugi, the mending of broken pieces with gold or silver.

I hope that the vulnerable places that have emerged from your story can be mended with the valuable power of connections, sharing and community.  I know that for me, sharing my stories and challenges, health or otherwise, with you – have done exactly that and I have consistently emerged stronger.

Thank you again for being willing to be go back through the years and remember the challenges and bring them back into the light. You impress me with your openness, endurance and strength, my friend.

Always,

Liana

 

The Beginning of the Story

Dear Deb –

I had no clue when we met at McMahon Hall at UCONN that we’d still be friends nearly 30 years later. We’ve seen each other through richer and poorer, through good times and bad, and in sickness and in health.

Probably the reason I describe our friendship with words that are reminiscent of vows is that we’ve shared so much over the years. We’ve survived plenty of adventures. You even humored me and let me talk you into joining the rugby team when we needed more players.  We’ve hiked together, cooked together, helped each other move, been a part of each other’s family events (including weddings and funerals), laughed for hours on end, and supported each other’s creative and professional endeavors.

The thread of our health stories has woven through our times together. Along with our shared interest in herbals and alternative healing, you’ve been with me and held my hand through health problems and I’ve done the same for you. We’ve worked with allopathic and alternative health practitioners and seen each other recover and move on.

When I think back to sitting together in Gampel Pavilion on graduation day, I think of two healthy women ready to face what life was about to dish out. I don’t think we realized that we’d be each other’s health care advocates, but somehow over the years our conversations about our health have been a constant and have shaped this friendship. Looking back on it, it’s clear that when I’ve need to make health choices, manage news about my health, or navigate the health system, it has been better to have a friend there to help me make sense of it.

We’ve both experienced myriad health challenges and know what it’s like to feel isolated and alone working through appointments, treatments and side effects. Our lives have been shaped by some of these health scenarios – for both of us, having children or not being one of the most impactful – and we know from experience that our health has shaped our work opportunities, our relationships and our families. Your food allergies have, unfortunately, reduced how frequently we’ve gone out to eat over the years and certainly my having kids has changed my ability to spend time with you (thanks goodness for social media, though).

What I’ve found is that when I’ve talked with you about symptoms, pain, fear or health risks, I’ve become more resilient in my ability to deal with them. Having gone through various health care visits with you, I’ve learned how much it matters when someone truly listens. You and I have often lamented when we’re not being listened to by doctors or nurses and we’ve speculated about how there was a better or worse outcome and how that impacts whether or not we feel like we’ve been understood and treated with dignity.

Last fall when you were navigating doctors’ visits while dealing with the complications of endometriosis, it was a privilege to hold your hand and ask the questions of the doctor checking you out after your surgery. It felt like I was able to make sure you were heard during that encounter and I could be sure that you got what you needed and didn’t feel alone. It’s the importance of moments like that and the wisdom that we, as friends, can share with others that really inspires me to work with you on this project.

We started this effort on a hunch that we weren’t the only women with a close friend who has accompanied her on a health journey, and that our health stories were worth sharing. While talking with women and interviewing them about their health stories during these past few months, three themes emerged; that women need to be heard when they talk about their health issues; that they need to be honored by being understood and treated with dignity; and that they need to be healed or receive solutions or curative care for the health problems and symptoms they are experiencing. These themes are our project’s foundation, though as we know from experience, and heard from the dozen women we have spoken with so far; being heard, healed and honored isn’t always what happens on our health journeys. Explicit or not, these ARE the expectations we all have when facing a health issue.

It’s the power of women’s’ health storytelling that we’re hoping to capture and share as we create this blog and podcast. I hope our work can help others know that they’re not alone, that overcoming health challenges is an accomplishment, that while health does shape our lives, we have the power, together, to shape our health.

Thank you, Deb, for these years of friendship, and for starting this storytelling journey with me. Thank you, also, for having the courage over the next few weeks, to share your story about your decades-long challenges with endometriosis, to kick off our first series of posts. Through sharing the story, I hope that other women with similar experiences can find comfort, wisdom and support.

May the women who share their stories with us know that we hear and honor them and their stories. May they see that through the telling of their stories, they may find their way to healing.

Always,
Liana