Insomnia & the lasting sting of medical gaslighting

Can't sleep? Watch out for dismissive doctors (and midwives and nurses and ...) as you try to figure out what's wrong.

Photo by Tuva Mathilde Løland on Unsplash

This week author Courtney Maum has an excellent essay in the UK Guardian about her long battle with insomnia. After decades of trying countless remedies, she finally got the correct diagnosis when a friend suggested she see an ear-nose-throat specialist.

Within the span of a five-minute visit with the ENT, she learned she had a nasal-cranial problem that restricted her breathing while sleeping. While extraordinary, it was also grief-inducing:

“I cried when I got to my car, but not out of relief. After decades of medical gaslighting, hearing that my problems weren’t invented didn’t feel liberating or validating. I felt robbed of time.”

That sense of loss: It rang familiar to me, as I’m sure it does for many women who have been misdiagnosed or mistreated by the medical system¹. It’s not something that’s often spoke about in the aftermath of medical trauma, but there is often a sense of lingering ambiguous loss for what could have been.

Insomnia is not normal

In my case, I was pregnant and developed severe preeclampsia. It went undiagnosed for weeks, in spite of insomnia, severe hand swelling, upper gastric pain, high blood pressure, and a racing pulse. I brought all these complaints to my midwife, and trusted her when she told me all of this was “normal.”²

The entire experience sucked, but like Courtney, the worst part of my illness was the inability to sleep. Not just because of how excruciating it was to try and advocate for myself and my baby in a dangerously sleep-deprived date, but because it was considered not a big deal, certainly not a medical priority.

Call me crazy, but I could not sleep with a resting heart rate of 140. I felt like I was having one long panic attack—because I basically was. Severe preeclampsia meant my blood vessels were incapable of relaxing³. My heart sped up as it tried to pump more blood through a failing system.

My nervous system became agitated and my liver started to fail, which launched a whole new set of medical inquiry while I was still being treated for preeclampsia, leading to more round-the-clock poking and prodding and sonography that further exhausted me.

In this state, I was not going to sleep without medical help, and it took so long to get the right medication I was harmed and traumatized in the process. In terms of loss, I will never get back those first few weeks of new motherhood, forever shadowed as they are by trauma. I also lost trust in the medical system. I delayed much-needed endometriosis surgery for several years because it would mean returning to the hospital where I gave birth, a place that tortured me.

What if sleep was priority #1?

As I’ll share in more detail in an upcoming interview with Human/Mother author Katrina Dunham, the experience opened my eyes to how society devalues women’s sleep, especially for new mothers, giving at most lip service to “sleep when the baby sleeps.”⁴

What if we went much farther than that — and radically prioritized the sleep of new mothers, much like they do in South Korea?

My hunch is by centering sleep for mothers, the rate of postpartum depression would plummet, and everyone would be a lot happier and healthier as a result.

1. Women are far more likely to be medically misdiagnosed than men.

2. You can read the whole story in my piece for Cosmo: Why are American women dying in childbirth? It’s an internet oldie at this point, but still relevant.

3. The hormone that fails to work correctly is literally called “relaxin.” Clever.

4. I also have an essay about it in the latest issue of the literary journal West Trade Review, titled “White Knuckling.” I’ll share it when the essay link is live.

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