Tuesday, November 27, 2018

The Invisible Woman

When I was twelve, I couldn't get out of bed.

It wasn't depression - though that was on its way - but it was the beginning of chronic pain. Upon waking, my back was stiff, a grinding, twisting feeling at the base of my spine. Sitting up was agony, and I still remember my mom hugging me as I tried to rise and get ready for school. She was probably as terrified as I was - watching your child in pain is a parent's nightmare.

I went through many tests - it was the first time my blood was drawn, and I had x-rays, doctor consults. And they couldn't find anything. All of my bones were where they were supposed to be, all of my blood work normal. And, for the first - and definitely not the last - time, I was told by a medical professional that this debilitating pain was all in my head. That I was making it up.

I was unlucky enough to experience early what many, if not most, women go through at some point in their lives; my very real medical concerns were brushed off. The following years were marked by this callous indifference - I can't tell you how many times I've been told that what was wrong with me was entirely fictional.

The reasons to ignore my illness increased as I got older. I'm mentally ill, so of course, any pain I might have must be psychological. I was overweight, so my chronic digestive problems, neurological problems, even hair and skin problems, were assumed to be weight-related. When I first talked to a doctor about what I knew was a gluten sensitivity, she told me to take vitamins and eat more vegetables. When I got a concussion, the neurologist was so helpful, so understanding, until he accessed my medical history and concluded that my pain was due to anxiety.

I've waited for hours in urgent care facilities, only to be treated with irritation and condescension. I've been laughed at. Imagine what that feels like - to have something going wrong with your body, to be scared, to be derided. And I know I'm not alone in this.

Women are treated appallingly in the doctor's office. Double that if you're overweight, and triple it if you're mentally ill. No one takes us seriously, and we're just as likely to be accused of prescription-seeking behavior as hysteria.

I felt this, by comparison, when I recently went to urgent care for a sinus infection. I'm thin again. I was in and out, given a course of antibiotics, within 20 minutes. What a privilege it was! My smaller body made me more credible and more important. Two years ago, when I went in with a concussion, I was there for so long, basically ignored, and sent home with the suggestion that I might take Advil.

So - my back pain. It started when I was twelve. And no one, no one thought to consider the fact that I was entering womanhood. Last year, my primary care physician told me to adjust my posture and never followed up with me, my pain brushed off yet again. And almost 20 years from those scary mornings in middle school, I've finally been diagnosed with endometriosis.

Endo has been observed in girls under ten years old. It's the cause of significant chronic pain in a significant percentage of women. There are very few courses of treatment - either continuous birth control or surgery. And it can cause infertility, which matters to me not at all, but I can't help but think - I went un-diagnosed for 20 years, and what if I had been trying to get pregnant? Would I have received care? Maybe I would have - maybe adequate healthcare for women is focused on childbearing. Maybe we're more valuable if we're the vessel for someone else.

I'm facing the rest of my life with chronic pain. The last course of treatment I attempted caused my mood to plummet, a side effect of birth control that nobody seems to care about. I'm hopeful, more than I ever have been, because at least now I have a doctor in my corner, a woman who listened to my concerns and, in what feels like a miracle, actually believed me. And I do wonder if I was believed because I weigh less. I wonder if I was taken seriously because I did all the research ahead of time, because I stayed calm and collected, because I didn't disclose my mental health status. I thank the universe for this wonderful gift of being taken seriously, because I know what it's like, I have 20 years of experiences of being told "it's all in your head."

About a third of my life is spent sitting on a heating pad, now, and popping Advil, and researching homeopathic analgesics. It's not the worst, because I have another privilege - I don't go to an office, I don't run after kiddos anymore, I don't need to interact with others. But looking at the types of pain which come with female bodies, looking at how we're treated by those people we should be able to trust the most - it makes me wonder how much other women suffer in their daily lives.

Income lost. A lack of confidence, a lack of respect. The grin and bear it method of capitalism. Problems with fertility, a sense of personal failure. Little girls who hurt and who learn too early that the world doesn't care. My mentally ill sisters, my overweight sisters - and let's not forget women who face even more barriers in the doctor's office, like ethnicity and gender identity.

Bodies are tricky and they don't always do what they should, but medical care shouldn't be this hard and doctors should do what they've sworn to do. We shouldn't have to spend all of our time doing the research about our pain - sometimes learning more about illness than our doctors might know - in hopes that we might be heard. We are not less valid because we have reproductive systems. We should not be seen as vessels, as objects, as hysterical. We shouldn't have to lose weight just to prove we are worthy of care; we shouldn't have to keep quiet about our other illnesses to get respect. 

I lay in bed last night, that grinding pain taking root in my left hip, my pelvis, my thighs, and I thought, what would my life be like if I had been diagnosed 20 years ago?

No girl should have to grow up like that. No woman should have to ask that question.   

We know what it's like to be invisible.

All we want is to be seen.  


  1. This should be a part of every doctor's training, hung in every office. Well said, Alice.

  2. Just an FYI....this happens to boys and men, too. This is all the fallout of a system of medical care that has been fully privatized by big business (insurance companies). Physicians have to see 30-35 patients per day in order to cover overhead costs of a practice, pay off student debt and earn a living. Not much diagnosing gets done in a 10-15 min office visit that usually gets interrupted by an important telephone call from another physician. Since Dr's don't run the system anymore, they are forced into a free market system and there is no time to listen and hear what patients have to say. It's a shame and I feel bad that you have endured so much pain for so many years, but this is just how the system now works. Use your time to fight for a cause....ACA and Medicare for all.

    1. Pretty sure it’s not okay to insert oneself into what is clearly a woman’s story to say, “men, too!”

    2. I'm a woman with a husband that has "strange" health issues that were left undiagnosed for years....just saying that this doesn't only happen to women. AND it's more of a problem with the entire healthcare system. Everyone is "invisible" when it comes to healthcare, unless one can afford concierge medicine on top of health insurance premiums. I feel sorry for her suffering, but decent healthcare is an "everyone" issue.