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