Reflection: Please believe me
That’s me, a week before the symptoms started.
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I spent the better part of Mother’s Day Sunday in the Emergency Department of the Vancouver General Hospital. I decided to go because I was having some symptoms that were eerily similar to the ones I had 12 years ago, before I got very sick and needed life-saving brain surgery. Something was wrong, and I didn’t feel safe waiting to see what might happen.
By the way, if you’re new to the podcast, you can go back and listen to the very first episode to hear more about my disease, and how I got here.
In the 12 years that I’ve known about my condition, I’ve been stable, for the most part. I haven’t had to do this too often. Which is lucky, because my disease is extremely rare and unpredictable, and most doctors don’t know how to deal with it. Or with me. But I know my body, and I’ve learned what feels like a normal headache and what feels like a dangerous headache. The problem is getting doctors to believe me.
The doctor I saw in Emergency on Sunday walked in, tilted his head, and said to me, “I’d never heard of your disease before. I had to look it up.” Then he sat in a chair facing me, leaned in, and said, “there’s a lot of scary information on the Internet, isn’t there?”
I took a deep breath and explained to him that sure, I had read a lot about my condition when it was first diagnosed 11 years ago, but I don’t make a habit of reading about my disease or symptoms online.
He took me seriously enough to order a CT scan, and when the results came back he told me that I should feel relieved that they didn’t find anything on the scan. He told me that the neurosurgeons on call weren’t going to come to see me, because everything looked fine.
I asked him to see if the neurosurgeons might come see me anyway. I told him what I thought was happening, I told him the name of the medical device I have implanted in my brain, and he stood up and said, with his back to me, “I don’t even know what that is. But the neurosurgeons said to bless you and send you on your way.”
I wasn’t relieved to find out that there was nothing wrong. It might not have been an emergency, and I’m glad I ruled that out, but just because it’s not an emergency doesn’t mean it’s not a ticking time bomb.
The reason I’m not relieved is that this has happened before. Several times.
I’ve had to learn to advocate for myself. The first time I knew something was wrong, in 2012, it took me three tries to convince doctors to do a thorough investigation. I kept telling them something was wrong, but they told me I was fine and I should stop worrying. During one of my three tries to be taken seriously, a male doctor actually suggested to me that my symptoms were caused by PMS. Yeah.
So I got sicker and sicker and I kept being told that there was nothing wrong with me. But they weren’t even looking. I went to see a chiropractor for relief from my headaches and it was there that I had a routine x-ray that showed my shunt was broken. So it was a total fluke that the problem was even discovered. Once I had the evidence that doctors hadn’t even bothered looking for, I was admitted for emergency brain surgery the next day. Because I was really sick.
But when the exact same thing happened three years later, I knew what to say. I showed up at Emergency and told them which tests they needed to perform and what to look for. The doctor was skeptical, but he went along. And he seemed genuinely surprised when the results came back and sure enough, I was right.
Before I knew better, I used to believe doctors when they told me time and time again that I’m overreacting, that nothing’s wrong. But I’ve learned that when I have an instinct about my disease, an instinct that’s supported by 12 years of experience, I’m right.
So I’ve had to learn to advocate for myself. I’ve had to learn to speak their language. Which basically means that I have to know exactly what’s wrong so that I can explain it to them and they can confirm it. But I’m not a doctor. And if I’m having symptoms that I haven’t had before, I don’t have a way to point my doctors in the right direction. I don’t have the right language to explain to them that this is more than just my instinct. And it means that they don’t take my complaint seriously. Being an expert in your own body, your own disease, doesn’t mean anything.
This may seem like it’s unrelated to our exploration of motherhood child-free living, but here’s why I’m bringing this up: we talk a lot about gender on this show. And this feeling of not being believed is so familiar to me in so many parts of my life, not just when I’m dealing with my illness. I suspect, if you identify as a woman, that you’ve felt it too at some point.
Women’s pain is not taken seriously - this is well documented in the scientific literature. And it’s not just because medical knowledge is mostly based on male physiology - it’s because there are documented gender biases when it comes to treating pain. Meng and I talked about this - it took her ten years to convince her doctors that her pain was debilitating.
And I have it easy. I am enormously privileged - I’m white, I’m heterosexual and cisgender, I’m educated, I’m middle class, and I know how to navigate the health care system. It is much, much worse for anyone who experiences multiple and intersecting forms of bias or discrimination.
I’m furious about this. I’m furious that it’s happening to me, again. And I’m scared. It really does feel like a ticking time bomb. Phil’s scared too. When he wakes up in the night he checks on me to make sure I’m still breathing. I hope there’s a simple solution to whatever it is that’s going on. I really hope it doesn’t involve more brain surgery. And if it does, I hope that I can survive it.
Something is wrong, and I don’t know what it is. I can’t tell anyone what to look for, because I don’t know. And I’ve been ratting every single cage that I can so that my pain is taken seriously.
I know how this disease has felt in my body for the last 12 years and I know for sure that what’s going on right now isn’t normal. I just hope that someone will believe me before it’s too late. The stakes in this case are really high: my eyesight, my livelihood, my life.
And I hope you’ll forgive me for being a bit morbid but I need to tell you this. I don’t want to leave anything unsaid: I don’t know how much time I have. I got twelve years I wasn’t expecting. And I finally feel like things are getting really good. I’ve never been happier in my professional life, my creative life, and my personal life. And so if this is all I get, I’m going out on a high note. But I want to enjoy this for much, much longer. I hope I get to stick around. I hope I get to keep making this show and connecting with brilliant, amazing souls from around the world. But if I don’t, I want you to know how much I’ve loved doing this, how much I’ve appreciated hearing from you, and how much I love the people in my life—including you, internet friend.
Some of the great joys of my life are having deep conversations with interesting people, and I am so lucky to have had the opportunity to do it.
I’ll keep doing it as long as I can, believe me.