The first reaction I received was from a friend. We are not intimate — I did not know that she has struggled with major depression all her life — but her text was emphatic. It was just before Christmas, and she had written to say that she had immediately forwarded my New York Magazine cover story, “Listening to Estrogen” to “all the doctors who haven’t been able to help me.” Several days later, we took a walk and she explained.
Her depression, she told me, started as a teenager when she experienced PMS as a debilitating paralysis, unable to get out of bed to go to her college classes for four or five days a month. After the birth of her first child she had postpartum depression so severe that she entertained homicidal fantasies and felt as if she was not walking on solid ground. Now, in her mid-40s and experiencing the first symptoms of perimenopause, she is trying to keep her depression at bay with spinning, yoga, and the daily routines of a working mother. She is exhausted from trying to fix this problem that no one but her closest friends and relatives know she has. She has sought help — the best, most credentialed help — for her depression for decades but no one has ever put the pieces together: she has taken every kind of antidepressant and done every kind of talk therapy, but hormonal causes and correlations have not been a meaningful part of her conversations with her doctors. And because she’s functional — a beautiful, competent, successful middle-aged woman — no one has seriously, or earnestly, heeded her complaints.
From its inception, “Listening to Estrogen,” a story that described a small cohort of women who suddenly and without warning get the symptoms of schizophrenia as they approach menopause, had to walk a fine line: not reinforcing old stereotypes — women’s hormones make them crazy — but pressing the point. Science shows that hormonal fluctuations in all phases of life do correlate with severe mental illness in some minority of women, but medicine does not recognize this fact in most cases. Psychiatry residents are not required to think about hormonal flux in nearly half of the programs in the U.S. and scientific research into its mechanisms is practically an afterthought. Instead, female hormones are treated with an antique combination of bias and disgust, and women’s complaints met with disbelief. That these hormone-related psychological disorders occur oftentimes around menopause, when women are already beginning to become invisible and diminished in society, exacerbates the negligence.
Every article enters the world differently, sometimes with an explosion on Twitter, other times with wonky critiques. This reaction has been so … personal. All my inboxes have been full, every day for the two weeks since “Estrogen” was published, with personal stories from women and the people who love them. Many marvel that they are, at last, being “seen.” One, who went through menopause early, at 46, knew she was losing her mind. She DM’d me on Twitter. “For ten years, I have been so damn ASHAMED of what happened to my mind, and all of a sudden I’m not anymore. There was a reason. And I’m not alone.” A homeless woman in New Jersey DM’d me, too, saying she was crying with relief. In the park, where I walk my dog, a friend grabbed me. “This is happening in my family right now,” she said, and then went on to tell me about a relative who had been married and raised two children into adolescence and then went off the rails and was alternately living outdoors and putting a rug over her head to impede the voices she was hearing from outer space but also refusing medicine or hospitalization. “She might take hormones,” my friend said, if she could only find a doctor willing to treat her with them. A woman from a former book group, an acupuncturist, sent me an email. “I’ve seen so many symptoms of perimenopause and menopause that are not discussed in the medical literature,” she wrote. “This must change.”
Through my website, individual readers told me about insisting on hormone treatment for their serious mood disorders against doctors’ advice. They — or their partners or friends — felt they knew what was wrong with them even when medical professionals did not. I heard about a dentist with a successful practice deciding to take oral hormones after receiving a diagnosis of schizoaffective disorder around the time menopause — over her gynecologist’s objections. The dentist had become “a depersonalized zombie on psychotropic drugs,” a friend of hers wrote to me, “and her business suffered greatly.” With supplemental estrogen, the dentist was able to reduce her doses of antipsychotics and her mental health — and business — recovered.
At 55, “hell broke loose,” another woman wrote, “and I began having mental-health issues. I repeatedly told my GP, GYN, and anyone else who would listen that it was connected to my hormones. Nope! They insisted it wasn’t. I insisted it was, and after a few years, and hearing voices in my head that were not mine and fearing I would listen and take my life, I was finally able to convince my GYN, who was retiring and I don’t believe gave a shit any longer, to give me an RX for Estrogen. Within a few weeks I felt human again, and combining Estrogen with Progesterone and now Testosterone, all in very weak doses, I am 75 percent back to a functioning status, but I still have symptoms and keep track of everything each day on a chart.
The saddest stories were those from families who felt that “Listening to Estrogen” solved an old mystery, or revived an old tragedy. “My sister, in her mid-40s, took her own life,” wrote Beth Ann Steinberg, from San Francisco. “She had a complete personality change and demonstrated many of the same symptoms your article references. We worked unsuccessfully to get anyone to listen or get her the support she needed.” Later in our correspondence she wrote, “I understand that Amy’s mental illness was no different than her having cancer. They are both diseases that can often be devastating. One is treated with compassion and the other is viewed as a personal failing. I refuse to stigmatize mental illness by not being honest about it.”
The most devastating note came through the U.S. mail, a single, typewritten sheet.
My mother was diagnosed with paranoid schizophrenia in the 1960s (her symptoms were exactly like those of Professor John Nash as represented in “A Beautiful Mind” and, like him, she was institutionalized and underwent many shock treatments, to no effect other than causing her to lose her memory. She died shortly afterwards, when I was 17.)
As a child who grew up with an increasingly depressed and then utterly frightening mother, I of course had no idea what was wrong with her, but when I became an adult I began to suspect that hormones must have been at the basis of her change of behavior. I dug deep into feminist theory surrounding madness in women. It all made me very angry. I will always be angry about what happened to her, and wonder what she might have become had she been helped by proper medical treatment.
I take Janet’s exhortation — to help her and others like her be seen — seriously. My hope is that “Listening to Estrogen” will provide an opportunity for women to connect with each other and tell their stories — not just for their own sake, but for the rest of us. And so I’m hoping to hear from more of you, to set up a way for you to share.