Patient advocacy and health literacy: Interview with Abby Norman, Author of “Ask Me About My Uterus”

Implicit bias has stained healthcare, creating an all too common experience for people with endometriosis of dismissive physicians, downplayed health concerns, and delayed diagnoses. Particularly, there exists gender norms in pain literature, distinguishing men and women’s perceptions and managing of pain. In fact, studies have shown that women receive less pain medication, more antidepressants, and more mental health referrals- illustrating these biases. Abby Norman recounts her path to a diagnosis and necessary patient self-advocacy in Ask Me About My Uterus. Abby combines her personal account with interviews and past and present medical research. We were able to talk with Abby to discuss the patient-physician relationship, including patient burden, health literacy, and self-management.

*Editors note: We conducted this interview through Google Docs

Your book skillfully mixes personal account and research- discussing your personal journey with endometriosis while also explaining the latest scientific findings and providing background on women’s health. How did you find resources for the research your book? What surprised you most during this search as both a researcher and a patient?

The research piece was probably more intuitive for me because I love research to begin with, but also because at that point I’d already been doing a lot of research as part of trying to get a diagnosis. Then, subsequently, trying to unravel what that diagnosis met. I read a lot! Mostly in the beginning I was parsing through medical journals because, at the time, I was working in a hospital and had access to those resources. Actually, by the time I started writing the book I was no longer at that job and therefore didn’t have nearly as many resources to work with. So I relied a great deal on the help of librarians both where I live and in NYC. I also reached out to folks like Noemie who I figured out were sort of on the cusp of research which was exciting both because I wanted to have their perspective and expertise but specifically with Citizen Endo I was so pleased to be able to talk about the work in the book and be able to use the platform I’ve acquired to continue to elevate it.

I think the most surprising thing has always been, and continues to be, the sheer breadth of this issue. Both in terms of the historical precedent and, presently, just how many women tell the same story. So often when I read accounts, or talk to people, the stories are really verbatim. We’re talking about these experiences in the same way but we’re also hearing — with disconcerting consistency, really — the same things from medical professionals. Or from the people in our lives who don’t really understand. It’s almost like there’s a script to it that’s been around for hundreds, if not thousands, of years. So, I felt really motivated to try to challenge that and, hopefully, begin to rewrite it.

In your book, you focus on the additive burden on people living with endo to be their own advocates. Can you tell us more? Based on your research, do you find that this is particularly true for endometriosis compared to other conditions (eg invisible ones)?

I think within the chronic illness community there is a disproportionate burden on anyone who is dealing with a condition for which research and resources are little, even if the community is strong and supportive. There is, really, quite a robust patient community for endo and associated conditions (PMDD, PCOS) but this depth and commitment just doesn’t seem to be reflected in the more academic sense, or within the medical or research community. And that’s where the burden falls to the patients because we need allies in the medical community. We need allies in research. We need allies in government and within society more broadly. I think, too, that there is certainly an added burden when you’re talking about a disease that primarily affects women, or those who identify as female, and that many of us are also dealing with subsequent barriers to access. So, financial/economic burden, the difficulty in accessing care if you’re in any minority group, how that influences research (i.e. who is included in clinical trials, etc.) I saw this reflected in research and certainly anecdotally and in conversation but I think it warrants more attention.

We have found many people living with endo have lower back pain, yet most GP’s won’t associate this with endo, thus putting patients on a different trajectory, maybe delaying diagnosis. What do you think can be done to put an end to the delayed diagnosis many endo patients have experienced? Do you think researching comorbidities would be beneficial in this endeavor?

This is fascinating! I’m kind of . . .excited isn’t the right word but relieved, maybe? To hear that there is a correlation of some kind here? Because anecdotally I certainly hear that this is a symptom those with endo I’ve spoken to feel is especially consistent and especially debilitating. I have certainly felt this way and can’t really remember any point in my menstrual history where it was not a physical reality I had to contend with.

Part of the reason delayed/missed/misdiagnoses abound, especially in primary care, is the lack of a well-defined clinical portrait. Which is clearly something that Citizen Endo is working on in terms of developing a phenotype. I think the lack of a specific framework frustrates providers and certainly it makes it more difficult for patients to not just discuss their symptoms, but to convey the ways in which they may evolve. Or compound, in some cases. This has certainly been true for me. Because I think we don’t know enough about the sequelae — both in terms of the progression of the disease itself but also what may happen as a result of trying to treat it. Frankly, I personally have had to deal with subsequent health issues that stemmed more from surgery than from what I know of the process of the disease itself. And I think there are other patients, particularly I’m guessing those who have done treatment like Lupron, who may agree with that.

I think developing a better understanding of comorbid conditions is essential. I think it’s not just about getting the full purview of patient experience but we would likely develop a more thorough understanding of the underlying disease mechanism if we could understand how, or if, it relates to other conditions. Particularly those that are inflammatory.

What are your thoughts on the bidirectional gap, that exists both in education and experience, between patients and physicians? Should physicians be required to have Continued Medical Education more frequently in order to stay up to date with their respective fields?

I think it’s one of the most critical aspects that needs to be acknowledged, firstly, and ideally solved. I don’t think it will be easy. But I think there are certainly strides being made in the right direct in terms of trying to bridge that gap. I’m an enormous proponent of health literacy initiatives both in hospital and practice settings. Certainly, in communities. I wish I could do more work in this area where endo is concerned because I think it would benefit patients and those who support them, certainly, in terms of understanding what happens at the health care level, and the science/research level, that impacts their experience of care. But also, of course, going the other way and helping to clarify for physicians and allied health professionals what patients are experiencing and reconciling what their needs are. I think, too, that as we move toward more individualized approaches, that may also help to forge those connections. And, I hope first and foremost, to strengthen communication between providers and patients.

I’m actually just not sure what, if any, CME (Continuing Medical Education) exists that’s not just endo-specific but more broadly, that’s health literacy specific. I know I was working to develop some when I was working in health care but that was many years ago, ha. I’m sure things have changed.

You mention that depending on your doctor, their experience, and even gender, how endometriosis is explained to you changes. Can you elaborate on this further? Why do you think that is? Do you think this is specific to endometriosis?

I think it’s true for any condition theoretically, because each provider you work with is going to have different experience clinically and educationally that will inform how they view your situation. Over time I’ve actually come to think that what matters more than gender is age — or generation. When you consider that many of the medical professionals we’d say are experienced or specialists or are at the height of their careers were getting most of their education many decades ago, and that the foundation of their medical education was laid at that point, you can kind of see why they may operate in outdated modalities or mindsets that affect not just how they diagnose and treat conditions like endo, but what their core understanding of it is. Ideally, we’d like to think that all doctors will continue their education and stay on top of all the latest research for everything but that’s, of course, entirely unreasonable. Even for specialists who are really only focused on one or two body systems.

I think where we really need to focus our efforts and acknowledge that there is a need to reevaluate is in medical education. One of the things I remember being quite startled by when I was working in health care and taking a lot of courses in health care policy was that much of the textbook material was quite outdated. And then when I started looking for diagnostic pathways for endo specifically, most of the information even in more contemporary texts available to medical students was like. . .essentially copy/pasted from editions that would have come out maybe in the 1980s? Which, consequently, was also when a lot of the doctors I was seeing (and also working with at the time) would have been in medical school.

In your book you describe gastrointestinal and neurological symptoms as well. When thinking about self-management in particular, what are your thoughts about how to go about managing these symptoms in addition to the ones more typically associated with endometriosis?

Oh, I wish I had a good answer for this. As is evidenced by how we are conducting this interview* I am not self-managing well at all. I’ll be quite frank with you and say that this is a daily struggle, and one that I am by no means in control of or confident in. But what I can say is that once I accepted that I needed to live a life that is constantly amenable to change it became a lot easier to start building a reasonable life for myself within the limitations that being ill has imposed. Is it the life I wanted? The one I worked for or dreamt of? No, not even in the slightest way. But I’ve started the process of trying to regain some trust and faith in the medical profession. I have a doctor now that I have a good rapport with. I am trying to accept help from people in my life and also trying to get better at asking for it. In many ways one of the things that has made it so difficult to manage symptoms and to adjust to losing quality of life was that I’ve always held myself to a standard I set for myself before I got sick. I’ve always believed that unless I was striving for health I wasn’t trying hard enough. Or I was settling. And that’s something that I think exists culturally. An external pressure to achieve and constantly maintain health. But that’s not reality and I think some of us just learn that earlier in life, but eventually, everyone will have something — a condition, a disease, a pain, — that will become part of their life in a way that demands change or adaptation.

Where it gets frustrating, I think, is when you have a condition like endo and then as time goes on you develop other conditions — which may or may not be related and I don’t think I’ll ever know if I was necessarily predisposed to subsequent health problems or the exact relationship — and you just feel like you can never sort out this knot inside of you. All the pain and symptoms just become overwhelming and unclear. And then when you try to communicate that to people in your life who are earnestly trying to help — your friends, family, spouse, doctors, — and you can’t . . . not just because it’s difficult to articulate but because the science isn’t there yet, the research isn’t there yet, the very language you need isn’t there yet — it just adds to the feeling of isolation, the fear, and in some ways the hopelessness. And that, I think, more than anything else was why I wanted to write the book. To try to offer something there, to try to solve a small piece of the much larger, broader, issue. If I could just give a few people a tool, help them find their voice, or at least make them feel validated. . .I mean that’s all I wanted when I was 14, 15, 16. When I was in my early 20s. Even now, really. Still.

Are you optimistic about the future of women’s health?

I try to be. I think recently it’s been difficult to feel optimistic about anything that affects women because of our situation politically. But while I may not feel hopeful on a global scale, or in the big-picture society sense, I do feel a sense of optimism when I talk to women individually. Since the book came out my biggest disappointment has been that I can’t respond to every person who writes to me. My publicist and I were just talking about this — I wish I could. I know that a lot of time people write just to share their gratitude or just to feel that they’ve been heard, but I also know that over the last decade there have been so many points where I felt completely alone. Not just in terms of my pain but in terms of the world, because being ill and in pain can make your world very small. So, I wish that I could engage with every person who reaches out. But I hope that at the very least the book can provide some comfort — if not some answers. Which really, I think, deep down, is kind of what we all are seeking, what we all need.

To contribute to endometriosis research, you can download the Phendo app and track your symptoms. Tracking in Phendo may also help you understand your experience of the disease and communicate with your doctor.

For more information about our research and Phendo visit www.citizenendo.org/phendo.

Email us at citizenendo@columbia.edu