Your body is a machine for which your doctor has read the manual, but which you drive everyday. Trust your knowledge as a driver.
My partner drives us down the Eastern Freeway. It’s a bright sunny Sunday morning. I stare ahead and I cry.
We have just left an appointment with a neuro-gastroenterologist. He only needed to spend ten minutes listening to me before telling me I didn’t have the stomach condition I believed I had for the last three years. A condition that had taken the previous two years to diagnose, incorrectly.
The doctor tells me the diagnostic tests I undertook three years ago are unreliable tests. “There’s nothing wrong with the machine, just the operating system.” I don’t need the medicine I’ve been prescribed, he tells me. At best, this medication has just been acting as a placebo for a little while. At worst, it’s been setting me up for problematic long-term side-effects, like heart problems. The doctor says that I need to approach my symptoms differently: via the brain. I need to see a gut psychologist for hypnotherapy.
I joke enough about being a nouveau-feminist Woody Allen stereotype, but the idea of being an anxious playwright who hypnotises her stomach once a week is next level.
I have been battling a digestive system that has had it in for me since I first started pursuing a career in theatre in 2010. My stomach problems are hard to explain, and I fear that they sound lessened when they are written down. In summary, I have a stomach that acts as my second brain. When faced with stress, excitement, or social anxiety, my stomach doesn’t cope. I breathe raggedly, gulp in air, and my dysfunctioning oesophageal sphincter will not let me release this air out of my throat. Instead, the air sits trapped inside me, creating pressure, discomfort, bloating, hiccups, and eventually, the vomiting up of air.
This condition makes parties, weddings, long days, and pretty much anything that might cause me anxiety into fodder for an episode. In 2013 I was given a name for this condition: “gastroparesis”. Now, this name has been taken away from me, because aspects of gastroparesis do not apply to my condition.
Having my diagnosis retracted feels like a violation. I no longer have a clinically-understood reason to feel the way I do. It’s not my body’s fault at all. It’s my brain making me sick. Instead of having a defect body, I have a defect mind.
I have always had a sensitive stomach, but my symptoms worsened enough to pursue medical investigation in 2010, the year I was accepted into the National Institute of Dramatic Art. There is a clear link between worsening symptoms and the pursuit of a career in the arts. The unreliability of the work, the stress and excitement of productions and the ongoing self-doubt and anxiety appear to be clear factors.
I stare ahead at the road, and reminisce over some things I learnt in drama school:
- How to steal salad from my local bistro.
- Which cheap wine is the best cheap wine.
- The concept of ‘dramatic action’.
Dramatic action is the tactic we employ to get what we want. An actor hunts for clues of these tactics within your script. They then find physical embodiments of the tactic.
“She wants to intimidate him. How can I show that in subtle ways? What if I don’t sit down for an entire meeting? What if I drum my fingers on my desk whenever he speaks? What if I don’t ever let him finish a sentence?”
Good theatre involves one person’s dramatic action butting up against another person’s dramatic action. This is how we get tension.
Whenever I go into a doctor’s office, I’m reminded of dramatic action. This is for two reasons. The first is that I am very attuned to the inherent theatricality in most activities I undertake, so I can make them tax-deductible. The second is because dramatic action is extraordinarily apparent in places with a power differential.
Doctor’s appointments are scenes where moods can be dramatic or subtle. One party is at their worst, and the other is just having another day. One person has specific detailed information gathered in the dark with a torch, and the other has a brightly lit supermarket of possible ideas to select from, but is consulting a shopping list written in another person’s scrawl, with running ink.
My partner navigates the car while holding my hand. “I know it doesn’t feel like it right now,” he says, “but this is the best news. You don’t have a serious condition!”
I nod and I cry some more.
“Think how much you’ve spent on medicine all these years. You can now save that money.”
Money saved and spent is an easy way to process disappointment. It’s OK to get angry over money.
But there are other less tangible things to get mad about. I direct some of it at my previous doctor: for diagnosing me with the wrong condition, neglecting to pursue psychological aspects of gastrointestinal issues, and (for want of a better word), the unfairness of it all. If I could have a toddler-style tantrum in my partner’s Toyota while still ensuring he continued to drive safely, I probably would.
But I am predominantly mad at myself. I haven’t advocated for myself enough in this process, and this is what happens when we don’t listen to our gut (both literally and metaphorically).
As a young woman battling a condition that frightened me, I didn’t follow my gut instinct that my treatment wasn’t working. I didn’t put my foot down and demand better treatment. I allowed myself to be shepherded to and fro by a system that was too busy to deeply care for me.
I’ve found there’s a precedent for this. Young women’s conditions remaining undiagnosed, or misdiagnosed, or their pain underplayed by their doctors. One of the worst is this horror story from The Atlantic; a woman’s ovarian torsion was ignored for hours, causing her immeasurable pain and lasting trauma.
Why does this happen? An under-resourced system is the most glaring. Fear of challenging authority figures. The idea that women are being dramatic or hysterical when they complain of pain, rather than measured and honest, through gritted teeth. The idea that female pain is imagined or never as serious as say, a heart condition (where men can be at a greater risk). The fact that medical diagnosis relies on a doctor looking out for keywords and symptoms as the patient lists them, half-listening, half-playing a game of Guess Who, so that diagnosis can become a dangerous game of confirmation bias instead of starting from a blank slate.
There is a simple solution: it’s via your own interaction with the medical system and the way in which you choose to direct the communication you have with your doctors.
Imagine your body is a car. You are the driver and your doctor is a mechanic. You’ve never read the manual to your car; you just drive the thing. You know the quirks and hums of its engine better than anyone else, because it’s yours.
One day, your car breaks down on a dark country road in the rain. You try to read your car manual to work out what’s going on, but what with the pelting rain and the paltry streetlights, you’ll never be able to make head or tail of the thing.
The storm is so bad that your phone’s lost reception. So, you step outside the vehicle, and you struggle down the road to a Mechanic, miraculously still open at this time of night. The Mechanic makes sure you know how lucky you are that you got in to see her, because it’s hard to get a car serviced without booking ahead.
Now, you can’t tell the mechanic “the problem is with the gasket seal for the oil sump”. You don’t know car-speak. All you can do is describe the parts of the problem you remember. But it’s been a hard, rainy walk. You’re wet and you’re hungry. You’re aware your mechanic’s dramatic action is “finish work so I can go home”.
Your mechanic has to squint her eyes, listen to your attempt to explain the problem, and work out for herself what it might be. There are so many options needing narrowing down. Sometimes, she gets it in one. Sometimes, it takes longer. She might never work it out.
I know I have rarely visited a doctor on a sunny day with four functioning tyres and a beautifully purring engine. I’m normally arriving on their doorstep wet and bedraggled, desperate for an answer.
If a doctor doesn’t see you on a good day, they have no context for your worst day. Get to know a doctor in times when you’re not in crisis.
Be assertive. If you’ve done your own research, present it to the doctor and either ask them to explain it to you in layman terms or give their reasoning for why they’ve gone with the option they have. Ask about side effects to medication prescribed – not just the ones officially listed, but the ones people might complain about en masse in forums. Check if there are any other risks present and what to do if you experience any. Have they considered other options or solutions? Have they run tests to rule anything out? Create your own checklist. Go in armed and prepared. Don’t immediately get a prescription filled out if you have doubts. Seek a second or third opinion before taking action. If your doctor makes you feel like you’ve stepped out of bounds for undertaking this research, they may not be the right match for you. Don’t be afraid to be seen as an ungrateful brat if you ask for a second opinion. This is your body, and you live in it. If you’re not getting relief, it’s okay to seek out another perspective.
Don’t accept a diagnosis for an answer if it doesn’t ease your condition or if it leads to medication with an endless array of equally damaging side effects. This sounds so obvious on paper, but how often do we put it into practice? How long do we stay on medications with unpleasant side effects, hoping we can wait them out? Listen to the hum of your engine. Not every oil is the right oil.
Last week, I embarked on my new journey of gut therapy. I have strategies now. A twenty minute morning meditation. A breathing ritual to calm myself. I no longer have an officious sounding diagnosis to lean on, but I do have some strategies, and they are beginning to work. Now that I am closer to an answer for my own condition, I feel stronger. I know the power dynamic will always be there. The intellectual trepidation. The fear of being perceived as hysterical. But the thing about dramatic action is: it’s a tug of war, and I can enter the battle with a firmer grounding.
I will trust the muscles in my arms. I will dig my fingers into the grain of the rope. I will pull for as long as I have the energy to pull, and I will let go, gently, when I don’t.
This is how we get stronger.