In my dream life I am walking around New York City, unafraid.
It’s an ankle-deep snow day and the waft of bagels made of real New York City water hypnotises me all the way to the door of Absolute Bagels in Morningside Heights. An Everything Bagel and a schmear with some lox is on the menu, maybe toast that bagel too, please. With an iced coffee to wash it down, I walk to the Riverside Drive dog park with my best friend. The winter sun sparks magically off the fallen snow creating something close to magic twinkling on the Hudson.
In the Nightmare Realm we will be learning about medical gaslighting.
Gaslighting, as a word, comes from the 1944 movie, Gaslight. Paula, the niece of a murdered Opera star, moves to Italy to follow in her aunt’s footsteps. There, she falls in love with a man who moves back to London with her but slowly, and surely, things are not as they seem.
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Medical gaslighting – which is more likely to happen to women and people of colour and the LGBTQI+ community – happens when a physician or healthcare professional downplays a patient’s symptoms or pain and wrongly attributes them to a patient’s psychological state.
In my dream of life, I do not experience this. And I do not fall three times in the first three months of 2023 before acquiring a serious injury on the third fall and I don’t have to fight to see two neurologists and push for answers because I am scared something like this would happen – a serious injury.
Sometimes the dream is real and the real is just a nightmare.
In the nightmare the ankle twists my body to the pavement in Dún Laoghaire. A car drives towards me and my phone lands on the other side of the footpath. A silver lining is an elderly couple that stops to help, ensuring the car reverses backwards, on the lifeless street. In this nightmare, I cannot put weight through my foot and an almost qualified voice at a hospital tells me that my requests for a CT are my anxiety at play.
“It is only soft tissue damage, you do not need a CT,” the voice echoes from beyond the searing pain.
A technician emerges like a lotus from the mud. They are going to take more images than ordered because of the deformed shape of the ankle. Maybe, I think, this is not the nightmare realm.
Ortho says it’s soft tissue damage, says the voice back at my bed.
“I think it’s broken, I’ve never been in pain like this,” I say. “I want a CT.”
If it was broken you would know all about it, you’d be wailing, screaming in pain, the voice says.
I had been crying non-stop until a few moments earlier, which is unlike me.
In the presence of the voice, I wrestle with fear because I have not heard it since I made a formal complaint about its tone and vocabulary months earlier.
“When will orthopaedics come by?”
They are hard to get so they will not be coming down, the voice says.
The sun that seemed to shine through the window begins to dim and a grey pallor threads its way around the walls of the room like a cracked glass. They will see you in two weeks but until then, go to the ER and from there just wait until they get you a boot and crutches, the voice says. This is a cesspit of danger for someone with my health conditions. I must shake myself awake from the stupor of pain.
I’m alive in that same nightmare anyone with a chronic illness will recognise as their own. Where you must repeat your diagnosis over and over.
Medical gaslighting occurs when a medical professional is unwilling to be wrong (please, fellow patients, write to me and tell me of your experience).
What must this be like for healthcare professionals who observe this from their colleagues? How do they intervene? There is always an opportunity to say, “I’m sorry I got it wrong or let me find out the answer and come back to you”. This is something I heard on the rare occasion something went wrong, or a test was late, in the US.
I am reminded of an exchange between Paula and Brian in Gaslight. “He said I was going out of my mind!’ says Ingrid Bergman’s character. “You’re not going out of your mind; you’re slowly and systematically being driven out of your mind!” answers Joseph Cotten.
My sense of strength returns, I can’t go to the ER because I am totally immunosuppressed. People with cystic fibrosis can’t go. Renal patients on dialysis are immunosuppressed, but a double lung transplant recipient with this is even more at risk. BINGO! I am all three. I say it. “And, what about my kidney transplant? I am not jeopardising my chance at life. If it’s broken, I’ll be taken off the transplant list, so we need the CT now.”
The voice mentions my anxiety again and how, evidenced from earlier in the year, my “pain threshold” is not great. I strangle my voice so as not to audibly gasp. Responding to such a voice had previously got me labelled an “aggravated patient”. The voice accepts I am not going to the ER. Crutches and a boot arrive. The renal nurses, who may or may not have worked in orthopaedics at some point in their careers, will help me put it on.
The sun shines beyond practical reality as we drive home because I have escaped, but this is a fallacy, the landscape is grey and engulfs my thoughts. The ankle swells beyond recognition – a bulbous pear, rotted sour and with an electrifying bite. Each move is excruciating, even with the boot. I’m scared of muscle waste and in a handful of days, I get a set of exercises. I explain the pain, but, told to walk, I move ahead with a fervour to prevent infection in the lungs. I am tough, but I now cannot self-care.
Another voice tells me that my vomiting is due to my CF and to “hang in there ... the only way out is through”.
The next morning, I contacted my main team and they admitted me on a Friday. The doctor says: “I don’t want you to walk until we get this CT.”
Finally, someone is talking sense.
On Sunday morning, when my father visits, I plant my feet on the ground and begin to sob in agony. I am not a sobber but a simple step made me wail. Was I simply having some kind of breakdown after a year and a half of another organ failing? This is not a usual reaction from me, but I guess we can only meet ourselves where we are. There is nothing wrong with this, it is human. My inner voice said, “you’ve got this, Orla”, but the pain of simply standing eradicates any logic and the CT is nowhere in sight.
On a weekday, I’m told I have to walk. It is vital to my recovery and the foot is already too stiff. If I don’t move it, it might affect my chance at transplant and a normal gait. A trigger goes off in my brain. What if my unwillingness is just a stunted recovery? It’s so unlikely. If l show what happens when I simply stand, things will be understood. I begin to weep immediately from the pain. I’m held upright as I lean on a walker and we shuffle down the corridor. I am aware of eyes on the screaming patient, and the eyes trying to look away. I feel some kind of shame, but mostly a concern about how these noises might scare other patients. I wonder if these professionals are right: maybe 10 days on oxycodone and some more on morphine has affected me?
Someone else arrives and talks about something that is taped up in each room: Pyjama Paralysis. This is the condition of basically becoming so depressed and unmotivated in a hospital setting that the patient becomes surgically attached to their PJs and to lying in bed. I explain this is not me – I often teach from my hospital room and nothing stops me, ever.
I continued my MFA (Master of Fine Arts) while undergoing a double lung transplant. Clearly, whatever information they had received had influenced their perception. I felt hopeless. I refused to walk because I had already had too much pain for the day, but I promised the next morning I would. The effort at having to defend oneself in this situation was, to say the least, inane. And it kept appearing in forms of different interactions. This is something I hear so often from fellow patients – they don’t hear me, no one is listening, I am overwhelmed having to repeat my story endlessly, why don’t they remember?
The next day I walked six steps with self-care for the first time.
As I lay on the bed dabbing on Difene Gel and sobbing they told me I had to try harder. “Desensitise yourself” to the pain. I was not rubbing it in adequately. Then, without asking, the voice massaged the foot and I screamed.
Two hours later, CT fit me in. Shortly after, the surgeon arrived. Right there, dangling in the twilight of my inner ankle, was my broken tibia. My ankle had been fine when it twisted but, in that same second, the force had caused the bone to pull away from the bone. My tibia was fractured in a rare and unusual place, and I had been walking on it while it was broken as per prescription and fighting against everything, including, at my lowest point, believing in myself. “An X-ray couldn’t have seen it,” said the surgeon.
It had been 16 days since the injury.
Days later, I had my first general anaesthetic since my double lung transplant in 2017. They performed what is apparently one of the most painful surgeries possible.
Then, the real recovery begins.