OPINION
05/13/2018 08:00 am ET Updated May 13, 2018

Give Mothers — And All Women — Space To Talk About Their Pain

After the author began speaking out about having her pain repeatedly dismissed by doctors, women in her mother
Drazen_ via Getty Images
After the author began speaking out about having her pain repeatedly dismissed by doctors, women in her mother’s age demographic began writing to her with similar experiences.

Women are often socialized to put our own needs second, and society seems to regularly relegate women to secondary, if not tertiary, levels of priority. 

What disturbs me, though, is that it’s not just a woman’s needs, wants, hopes and dreams that take a proverbial backseat. Their pain does, too. In fact, the first to doubt a woman’s pain is not always society at large, or a doctor or someone close to her. Sometimes it’s the woman herself. Sometimes it’s a woman you know.

Sometimes that woman is you.

I grew up watching my mother suffer through pain and illness and witnessed firsthand the many ways the American health care system failed her. First by inadequately addressing the complexities of eating disorders as both mental and physical illness, and then by coming up short in offering her any hope of recovery.

During those early years, and even into my adolescence (when I still had the necessary selfishness of a child), I struggled to empathize with my mother, because I needed her. I needed her to love me, and I was angry and disappointed that she couldn’t. That she wasn’t able to.

Women want to be heard. We want our pain and our concerns to be taken seriously. We’d like to be seen, and valued, for more than just our potential to physically mother a child.

For years, I took this personally. I believed I must have been a bad kid. The kind of kid that not even a mother could love. Even as I got older and began to understand ― intellectually, at least ― that my mother was just too sick to care for anyone (even herself), thinking about her still filled me with an unquenchable longing and a deep sense of shame.

Those insights evolved into empathy when I was diagnosed with chronic health problems seven years ago. Because that’s when I realized: This is how my mother must have felt.

I spent much of my 20s on a quest to convince doctors to take my pain seriously. While my friends went on dates, I made doctor’s appointments. When my friends moved to new cities to take new jobs, I lost my ability to work outside the home. They got engaged; most of my romantic partners ghosted as my “ghostly” body withered away. Friends bought houses; I tried to reconcile almost a decade’s worth of medical debt. And as they became mothers and starting changing their new baby’s diapers, I ― after one too many near misses ― started to wonder if I should start wearing them myself.

I’ve had to learn to cope with a cascade of chronic health problems that started with endometriosis and ovarian cysts and ultimately led to gastrointestinal and neurological symptoms that have made once simple and joyful parts of life ― like eating solid food, having sex and traveling ― challenging, if not altogether impossible.

When you’re a woman dealing with health and pain issues involving the reproductive system, the conversation turns almost immediately to fertility (not just current fertility but future as well). And this conversation is consistently prioritized over a woman’s past and present pain. Caroline Reilly wrote about this extensively for Rewire; she struggled with how her endometriosis diagnosis might affect her fertility, but she also wisely noted that there were patients for whom fertility was not a concern. For whom it never particularly had been.

I wish someone had been there to listen to my mother when she was young and sick and trying to fit a child ― me ― into her life of pain.

I fell into that latter camp. Due, at least in part, to having been under-parented myself, I’d never been all that enticed to have children of my own. In fact, I said as much to my doctors early on as I searched for solutions to my symptoms ― that I have to invest so much time, energy and resources into my own survival that I have very little to give a partner, let alone a child.

Still, my doctors continued to act as though preserving my fertility ― and the possibility of motherhood ― was more important than trying to help me live a life with a manageable amount of pain (if not one that was pain-free).

When you’re a 19- or 20-year-old woman who is decidedly not ready to give so much as a passing thought to motherhood, it’s aggravating and confusing when doctors place undue focus and attention on your future fertility instead of on your current symptoms.

Once I realized that my illness (eventually illnesses, plural) was chronic, that I would never again be “healthy” the way I was before, I could no longer envision any of life’s big decisions. Buying that home. Moving to that new city to take a job. Traveling around the world. Going on dates. I was much more preoccupied with how my pain and other symptoms had taken over my life in the present day. I couldn’t think about the future much at all.

After I started speaking out about having my pain repeatedly dismissed by doctors, and after the release of my book last month, young women started reaching out to me with their own stories ― many of them similar to mine.

But then, women in my mother’s age demographic began writing to me, too. About how they’ve spent decades trying to make room for their pain next to their spouses in bed. Or between their kids in the backseat of the car. They told me about the many birthdays that have passed without them being able to go out to eat or purloin their favorite snack from their purse at the movies. How they had to put away their tennis rackets, and how no one has seen them at Zumba class in six months. That they missed their kid’s science fair ribbon or had to walk out at intermission at their school play. How they have friends whose new addresses they don’t know. That they haven’t danced at a wedding in years.

That they no longer get invited to things at all.

When you’re a woman dealing with health and pain issues involving the reproductive system, the conversation turns almost immediately to fertility.

As these women entrusted their pain to me, I began to understand more deeply why it was so impossible for my mother to be a parent, no matter how much she may have wanted to be one.

After women go through the sometimes years-long slog of proving and legitimizing our pain to our doctors, it’s often too late. The damage has been done, the window for treatment narrowed to the point of disappearing. Or, like in the case of my mother and me, some women simply get too exhausted to keep trying. They resolve themselves to living a life of pain and hide themselves away because they don’t want to be a burden to anyone.

Women want to be heard. We want our pain and our concerns to be taken seriously. We’d like to be seen, and valued, for more than just our potential to physically mother a child. Because being a mother is so much more than just physical presence: It’s the ability to be present emotionally.

I wish someone had been there to listen to my mother when she was young and sick and trying to fit a child ― me ― into her life of pain.

Perhaps the greatest gift a woman could give her mother today is space. Space to speak. So we can really hear her ― and perhaps listen out for the things she can’t bring herself to say.

Abby Norman is a science writer based in New England. Her first book, Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, has been praised by The New York Times, the Wall Street Journal, New York magazine, The Washington Post, The New Republic, BUST, Bitch and Ms. magazine. She hosts a daily podcast on Anchor.fm called “Let Me Google That.”

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