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Diagnosis & Therapy

A woman’s disease in a man’s world: Fighting for a diagnosis and respect

A woman’s disease in a man’s world: Fighting for a diagnosis and respect

Abby Norman, author of “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain,” takes part in a Q&A about some of the difficulties women with endometriosis may face when seeking medical help, the importance of being heard by physicians, financial issues, and the hope she has for the future

BY RANDY DOTINGA


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Perspectives on Endometriosis Management


Abby Norman’s first menstrual period appeared on Thanksgiving Day when she was 12 years old. She felt sick with cramps, diarrhea, and thigh pain and had to skip a dinner she looked forward to. Her symptoms continued during each period, often striking over the rest of the month too.

“I thought that was normal,” she says, and nobody in the medical world told her otherwise.

But her agony wasn’t – and isn’t – normal at all. As she would discover after a medical crisis in college, Ms. Norman has suffered from very real gynecological issues such as an ovarian cyst and endometriosis.

As she writes in her acclaimed new book, “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain,” her poor health launched her into an infuriating world of self-doubt spawned by it’s-all-in-your-head attitudes. Even physicians who are willing to act can make damaging assumptions, as she discovered when a surgeon assumed Ms. Norman valued her fertility above all and preserved her damaged ovary: “I was slowly figuring out that not only was my pain going to be disbelieved, but it was never going to take precedence.”

In an interview, Ms. Norman talks about the pitfalls that plague patients with endometriosis, the crucial importance of being heard, and the reasons she has hope for the future.

Credit: Abby Norman

Q: What have you learned about being taken seriously by doctors?

A: It really does seem to begin and end with just being heard. Even now, after writing this book, I’m still having conversations with doctors that leave me wondering if it’s all in my head – even as I’m staring directly at the evidence to the contrary.

It’s very difficult to persist through that kind of gaslighting even if you aren’t ill. When you’re dealing with that on top of your physical pain and the other symptoms, and the day-to-day challenges of trying to manage that, not to mention just figuring out how to live your life, it can feel insurmountable. It can feel impossible. The biggest challenge for me has been not taking on the blame. Not constantly battling with myself, like, “Oh, you didn’t do enough to avoid this,” or “You must have done something to cause this.”

Those messages will come at me enough. I don’t need to be laying them on myself. It’s much easier, though, for me to give that advice to someone else in a similar situation than it is to tell it to myself and really hear it, to believe it, to take it to heart, and put it into practice.

Credit: Abby Norman

Q: What price do women pay when they’re ignored?

A: What’s most dangerous is not when a woman goes to a doctor and her pain is dismissed or disbelieved. It’s when it has happened to her so many times that she stops speaking up, she stops going. She just decides she has to live that way and that she has no option.

Or that she has seen it happen to so many women in her life that she never even goes and seeks medical attention at all because it feels hopeless and pointless to do so.

Not only does it put that woman’s life at risk but it sets an example or a precedent. It sends a message that the situation is hopeless.

And I admit I do feel like that some days. I don’t always do the best job of advocating for myself, let alone at a more global level.

I’m not saying that women shouldn’t get frustrated or worn out. They do, and they will continue to do so because it is frustrating and exhausting.

But we need clinicians to ally with us. We need people outside of the chronic illness community to help. Because not only are we dealing with pain and other symptoms, but as patients, we’re bearing the burden to prove it. Even if we do, many of us have to reconcile the reality that there just aren’t that many treatments available, certainly nothing curative.

So we also need to advocate for awareness, for funding, for research. That’s a lot to ask or expect of anyone, and certainly those who are already struggling just to meet very basic expectations in their day-to-day lives.

Q: What have you heard from doctors over the years about your own health?

A: They’ve never seemed surprised that my periods hurt, and they also didn’t seem concerned if I said I experienced pain at times in my cycle other than during my period. You’ll often hear about “mittelschmerz” – midcycle pain at ovulation – but it’s not clear how much of that is normal.

Aside from the dangerous issue of dismissing women, one problem is that no one really knows what a “normal” period is or should be.

I always wonder if there’s a specific level of cramping during a period that’s considered medically normal and if there is, how would you even measure that? How would someone even know, in their own body, if what they feel is “normal” or potentially has some kind of pathology to it?

Whether it’s during a period or midcycle or any other time, though, if someone is experiencing pain so severe and lasting that they are missing school or work, I don’t think that could ever be called normal by any reasonable medical or social standard.

Q: What are some pitfalls that patients with endometriosis should watch out for?

A: I wish someone had told me how expensive it would be. And that I’d be in debt forever so I’d better learn everything I could about the economics of health care and chronic illness in America.

First of all, stay informed and empowered about your health care coverage! Having a chronic illness often means you’re utilizing health care services more often in a given year, and this can quickly become overwhelming in terms of finances.

If you don’t have coverage at all, certainly look into the hospital or clinic’s charity care program. You might be eligible for financial help too even if you do have coverage. Billing departments usually have patient accounts representatives who can help you keep unpaid bills from going to collections by setting you up with a payment plan, even if it’s just a small amount each month.

If you have a lot of health care services – prescriptions, lab work, other tests – in a given year, it also pays to get an itemized statement and explanation of benefits.

Make sure your doctor’s orders line up with the tests that were actually done, what the insurance was billed for, and what you’re responsible for paying.

Billing and coding errors happen. For example, sometimes you might get billed for a blood draw twice by mistake. If you catch them, you can dispute them.

It might not seem like a lot. But if you’re struggling to pay for health care, you certainly don’t want to be paying for errors.

Q: What should women know if they feel the need to fire their doctor?

A: They are absolutely within their rights to do so. And that if a doctor ever tries to discourage them from seeking a second opinion, it’s time to get a second opinion.

Q: Could you talk a bit about the cultural and medical history of endometriosis?

A: You can look back as far as Hippocratic texts and find references to conditions that, while perhaps not called “endometriosis” by name, certainly describe it.

There’s long been a medical fascination with conditions where menstruation was aberrant in some way, though as we know it was almost always ascribed to a woman’s emotional state – that is, hysteria, or more simply that she was “delicate” or prone to “melancholy.”

Q: What do we still not understand about endometriosis?

A: We know that pain is an incredibly complex physiological process, one that is not completely independent of our personal psychology. The thing is, even beyond how pain differs between men and women, it differs from individual to individual.

Our experiences with pain throughout our lives actually cause our relationship to it – our ability to withstand it and interpret it – to change. The more painful experiences you have, the more you understand about the wide spectrum of pain that exists and that the human body can experience. That’s all subjective, though. We are lacking in more objective measures which would make the experience of diagnosing, treating, and studying pain with the intention of understanding and communicating it much richer.

Specific to conditions like endometriosis, on a sociocultural level, there are a lot of messages that are set on undermining a woman’s interpretation of her own mind, body, and experiences – not just in terms of pain, but much more broadly.

Where it becomes difficult, and in some cases, life-threatening, is that the overarching patriarchal structures under which health care systems of the world operate – the very long history of misogyny in the medical profession and in our culture at large – constantly reinforce these messages.

Q: What’s changed for the better for women with endometriosis?

A: We’re broadening the conversation to include all patients – not just women. That’s one of the most crucial steps we need to take.

We can’t talk about the challenges female-identifying patients have with the health care system and society at large without acknowledging the experience of patients who have endometriosis or another similar conditions but don’t identify as female. Frankly, these patients often have additional and significant barriers to accessing even basic treatment, let alone the specialized care that is usually required when you start looking into endometriosis treatment specifically.

The Internet has made resources and, even more importantly, support far more accessible. There are international support groups and advocacy groups.

I’m also heartened to see that even if the United States is not necessarily making enormous strides, other nations in the world are making high-level investments and commitments to research and advocacy that I hope will change the conversation internationally. It will take time, of course, but any progress makes me hopeful.

Q: How are you doing now?

A: I’m mostly trying to figure out what’s next for me. I have a number of concurrent, chronic health conditions that I’m still dealing with, and I was still actively dealing with them as I was writing the book. I finished the book and it wasn’t as though I magically got better.

What has been amazing is that now that the book is out there and has taken on a life of its own, it has given back to me in ways I never could have anticipated.

There is something so incredibly humbling about the kindness of all these strangers when I’m ill. It really softens the intensity and makes me feel as though I can get up and face it for one more day.

Q: What are you hopeful about?

A: Even in the face of physical, emotional, economic, and at times spiritual challenges, the patients with endometriosis and associated conditions that I’ve met through my work are among some of the most powerful advocates I’ve ever met. To know they are in my corner and fighting this fight alongside me – even when I’m physically unable to “show up” – gives me hope