Medical trauma (And other things you might not know about transplant recovery)
I thought it was normal. Growing up in the medical world, I kind of had this idea early on that what doctors said went and I just needed to shut up and my feelings didn't matter and what needed to be done needed to be done. I've talked before about how time spent in the hospital left me with medical PTSD. Sounds of alarms going off, the smell of alcohol wipes, lime green, the strangest things set me off.
But that's not what I'm talking about here today.
As chronic illness patients, we're placed into a system. It's a system that is designed to run smoothly and efficiently, perfect for emergency situations. Fix the problem, patch it up, move on, in and out as fast as possible. Which is great when you're in a car accident and bleeding out, but not so great when you're dealing with a chronic, rare or otherwise complex condition.
So I grew up in this system that I knew was flawed, and I knew there wasn't enough mental health supports for patients, not enough resources, half the time doctors were pushed to their limits and just passed your case along to the next person anyway. And also people in the medical field rarely like being told what to do (especially in emergency departments) so the goal, or at least mine, was to keep my head down and survive.
Which I knew was messed up but I didn't know how messed up until I began processing my transplant trauma.
Not according to plan, I spent weeks in the ICU after my transplant on a ventilator. Ended up with some kind of lung infection, had a crazy reaction to the pain killers and sedatives. And during that time, obviously, no one consented with me and said, "Hey Ali, are you ok with this tube down your throat?" One of the things I had made very clear before surgery was I didn't want to be awake with a tube down my throat. And guess what happened? And I know in that situation there was good reason for me to be on the vent, and if I had been awake and coherent enough to make my own medical choices there is a possibility I would have chosen the same thing. But that's not the issue. The issue is I didn't consent. And that's something I now have to grieve and process.
The issue was I was taught to submit and not question. It's my body, and yet I am just supposed to go along with what doctors say. When they say jump, I say how high.
The issue is I've sat in too many rooms with too many different doctors who have looked at my chart and told me I'm lying, that I don't know my own body, that something is wrong with me that I know isn't (My favourite story to tell about this is the doctor who walked into my room and told me I was jaundiced. When I said I wasn't, he told me I wouldn't know if my own liver was shutting down or if my own skin was turning yellow. The culprit ended up being I was wearing my blue light blocking glasses, which in the sunlight reflected a yellow tint on my eyes, which he would have known if he'd asked me to take my glasses off like any other nurse who was in that room before him did, but he just insulted them too by saying they were just nurses and didn't know what they were doing. We laughed, because what else do you do, but it's actually a really tragic story and I have requested that doctor be permanently removed from my care team)
We believe there are good cops and bad cops (think back to the black lives matter rallies, when there were the people saying not all cops. Nope, not all cops are bad. I know some. And yet we all acknowledge there is a problem in our police force), the teachers that educate their students and the teachers we hear about losing their license for misconduct. So why don't we have the same approach with doctors?
I've met some amazing medical professionals who actually want to help people. And I've met a lot of doctors who don't ask or inform before a usually invasive medical procedure, who gaslight patients, exercise their power unethically and and view the patient as a number or a case file instead of a person.
Why do we so willingly hand over our selves to doctors just because they have a medical degree? I'm asking myself as much as anyone else. Why have we been taught not to question, to stifle our intuition? When did outsourcing our safety become a thing?
I love medicine, I do. I wouldn't be alive without modern medicine, and surgeries and new drug developments and vaccines and all the wonderful things science has given us. And I'm definitely not against it, as much as some days I would like to escape from the rat race of it all.
I'm against handing your power away. I'm against doctors who don't inform, educate or ask for consent before dealing with a patient. I'm against gaslighting, toxic masculinity and power and control inflicted upon others within the medical field.
I love my medical team, but I've come to the understanding that I'm in charge. Everyone on my team answers to me, from doctors to coordinators. No one else cares as much about my health or my well being as I do.
Ask questions, insist upon getting answers, advocate for your damn self and if you're in a state where you can't find someone you trust to advocate for you, make sure medical professionals ask for consent and explain the purpose behind every medical test.
What we need is a medical revolution, a switch to patient centred care. What we need is for people to stop giving their power away to people with medical degrees and outsourcing their safety.
Take care of yourself. Take care of others.
Thank you for coming to my Ted talk