An Open Letter to All My Healthcare Providers
Four pictures of me on different days, in different clothing. From left to right: the first picture shows my head resting on the arm of a chair in a doctor’s office, I am masked and my eyes are closed. The second picture is me wearing a mask and headphones looking down at the camera. There is transfusion equipment behind me and a line connecting the hanging medical bag to my arm. The third picture is me lying in bed at home with an eye mask on during the bright day. The fourth is me in a hospital room with a hospital band on my wrist, rubbing my red nose, tears streaming down my face.
To the people who chose the career, the profession, the calling to care for others, and specifically to those who take up the responsibility of caring for me. To my general practitioners, my nurse practitioners, my internal medicine doctors, gastroenterologists, psychiatrists, neurologists, osteopaths, massage therapists, nutritionists, physiotherapists, pain specialists, and every other carer who I may encounter in my future of disability, into old age.
Why don’t you ask me questions about my needs in healthcare when I tell you I have trauma? Why don’t you ask follow-up questions when I tell you that I’m autistic?
It is your duty to provide accessible and appropriate care, but you don’t ask me what my access needs are, and you don’t ask me what would feel safe for me, to not trigger my trauma in our shared time caring for my health. I’m always told to speak up, to be empowered to ask for what I need in those spaces. Should I interrupt you? Is it empowering to spend most of my 15- or 30-minute appointment, in which I am supposed to only raise one or two health concerns, to teach you to ask me questions? Do you understand how your lack of engagement burdens me with the “empowerment” — which is actually self-advocacy labour — of explaining things to you to get you to care about things I’ve already named, but you didn’t ask about? If I’m sick, dealing with a chronic pain flare, or any other health difficulty (like, why I’m in your office to begin with) then this labour might be too much for me to take on by myself? And if, for many valid reasons, I’m choosing not to monologue at you about my needs at the start of our sessions, what I’m left with is self-reporting only AFTER you’ve harmed me. Is that accessible? Is that appropriate?
I have been my own studious caretaker for 36 years. All 36 of those years, I was autistic and ADHD. For 35 of those years, I only understood my turbulent experiences, chronic pain, and terrible loneliness to be symptoms of trauma, but I could never explain exactly where that trauma came from and how it managed to rule every aspect of my life without any of my caregivers even noticing. For all of those years, when I told you that I had trauma, I was met with silence, a nod, or simply the next question, “what can I help you with today?”
Like so many silences, interpreted through decades of asking for help and being told “that’s nothing,” or “that’s not possible,” or “it’s probably just stress, you should deal with that,” what I heard when you said nothing was “I’m waiting to hear something I need to respond to.”
I also took this silence to mean that you didn’t believe me. Because if you did, it would matter enough to discuss.
Trauma is only considered a “real” diagnosis when it takes the form of Post Traumatic Stress Disorder – a very specific iteration of trauma’s influence on people, and a drop in the ocean of its real, lived effects. Why is that the only acknowledged diagnosis? Because it’s in the Diagnostic and Statistical Manual (DSM), the ruler of psychiatric conditions in the medical world.
Without a formal, medically confirmed diagnosis, every single one of my healthcare practitioners is not obligated or trained to recognize my self-reporting. In fact, every time I report, and every time I get upset at the way I’m being treated, especially if my trauma is triggered and I lose composure, I am more and more likely to be viewed as a “problem patient” whose self-reports can’t be trusted. When a medical professional sees fit to send me a psychiatry referral, I’m off their hands. When I see psychiatrists, they laugh me off — literally, I have been laughed at while describing my experience — because I do have strong experiences that they empathize with, but I don’t meet “diagnostically significant” criteria for anything in the DSM.
Despite chronic pain. Despite regular meltdowns. Despite being unable to focus, work, relax, or take care of myself. Despite showing up in the emergency room. Despite my depression and disordered eating and sky-high anxiety.
I should mention here that I take anti-anxiety medications that were prescribed to me before my autism diagnosis, and it is well-documented that autistics who are masking have extreme anxiety as a result. Depression, too. Anti-depressants never worked for me, because I wasn’t chemically depressed — it was my trauma. Like I said it was.
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In May of 2024, I became a DSM-acknowledged patient. Autism Spectrum Disorder. Attention Deficit/Hyperactivity Disorder. They are classified as neurodevelopmental disorders, and in Canada they are also considered disabilities.
Let me be absolutely clear on my personal perspective, which you never asked for: these are not MY disabilities, because disability does not belong solely to the affected person, but to the failure of support structures to meet any person’s variation from expected function. Most variations in eyesight are not a disability, because glasses and contacts and even surgery are readily available and socially accepted. It’s considered normal to expect that some people need glasses to see. The weird and gorgeous and sensitive way my brain works is mine, but disability is not. Disability is what happens when our social and physical environments — constructed by all of us collectively — are only made for one type of brain, and the labour of adapting, adjusting, mediating, and recovering from the inaccessibility of those spaces, is shifted squarely and silently onto the individual.
I wish I didn’t have to fly the flag of disability to get your attention, and…I wish it worked when I did. I would much rather acknowledge differences simply because they are true and real, to extend care to understand what they are and what supports are needed, but this is exactly what you do not do. With such a ubiquitous lack of engagement, I have accepted this reality with dejection, feeling defeated and hopeless, for most of my life – until an example of how care SHOULD be provided gave me the space to breathe and know the difference.
In my long list of practitioners at the start of this letter, I specifically left out my psychologists. I only know that appropriate and accessible care is possible, and even EASY to provide, because of their grace and attunement.
So, if all of my care providers are not going to step up and get curious, be engaged, or even acknowledge my self-reporting of trauma (which, by the way, includes the explanation they give for why I feel the way I do: chronic stress), that’s technically something they’re allowed to do.
What healthcare providers are not allowed to do, according to the Charter of Rights and Freedoms and the Canada Health Act, is ignore two formally diagnosed disabilities. My diagnoses do not turn on or off whether I’m speaking to a psychologist or a nurse.
I am always autistic, always ADHD, always traumatized – and all of these experiences affect my health.
I ask again: why do you not ask follow up questions about how my disabilities affect our interactions?
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I make no claim that I know what is in your heart or mind when you don’t respond to profoundly important information about the human you are caring for. Without knowing anything about you as a person, it would not surprise me at all if your reaction to this feedback is defensive, or angry, or sad, because the of the system you work within – either the healthcare system, a regulatory system, an academic system, the financial and logistical systems of our shared society or the social norms of our shared culture. For some professions, you’re inundated by all those systems at once.
Knowing those systems as I do, which has been a topic of study for me for two decades simply out of my drive to survive them, I would not be surprised if it feels helpless or frustrating to be criticized when you’re doing a very difficult job under system-wide conditions, all because you want to help people.
I will not hold you personally responsible for how you were taught to behave, or for the restrictions placed upon you. I will hold you responsible to do no further harm.
When I tell you I have medical trauma, it is necessary and appropriate to ask how you can make our relationship feel safe.
It is necessary and appropriate to ask me what I struggle with as an autistic person seeking medical care, and to collaborate with me on reducing or removing those barriers in our relationship.
It is necessary and appropriate to seek professional supports, information, and options to understand neurodivergence and trauma within your field of healthcare and your specific workplace, because you have access to the medical system that I don’t have as a patient.
It is necessary and important for you to identify when you are not able to provide me with appropriate and accessible care, and to offer me other options.
You are in a position of power in regard to my wellbeing, especially if you have responsibilities and accreditation from the medical system. You are responsible for knowing your limits and your privileges. You are responsible for knowing the scope of what the medical system offers — and where it fails.
You are not personally responsible for the traumas of my past, but you are a part of the same system that caused them, so you have power to replicate that same trauma. You also have the power to provide a much better experience.
You have the power to be human.
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Scenario.
Doctor: “Hi Georgia, what can I help you with today?”
Georgia: “Hi, I’m here because I’ve been trying to figure out several long term health problems that I’m still dealing with every day. I’ve been to many specialists, but nobody has ever been able to give me a clear diagnosis and treatment, and I think that’s because my trauma plays a huge part in my health. I also just found out this year that I’m autistic and ADHD, which is part of how I became traumatized, so there’s a lot going on here. I avoided doctors a lot in my youth because they were so dismissive of me, and I have medical trauma from that time, but now I just want to not be in pain anymore, and I really want to know what’s going on. I’m exhausted.”
Possible answer #1
Doctor: “Wow I’m sorry to hear that you’ve had such painful experiences with medical care in your past, I’d really like to make sure you feel safe when you come to see me. I’ll be able to help you more effectively if you feel comfortable to be honest with me, so let’s build that trust slowly. You also mentioned that you’re autistic with ADHD, getting that late diagnosis must have made an impact! With both your trauma and your neurodivergence, what can I do to help you feel comfortable and supported in our appointments?”
Possible answer #2
Doctor: “Thank you for telling me all of that, Georgia, it sounds incredibly difficult and coming to the doctor might be extra hard for you with all that pain in your past. I want to make sure I’m the right fit for you, so let’s discuss your needs in medical care before we launch into it. If I can help support you, I will do everything I can, and if you need someone else, I’ll recommend some folks who can meet your needs more effectively than me.”
Possible answer #3
Doctor: “You mentioned a few things there that are very significant: trauma, autism, ADHD, and even the late diagnosis. Thank you for telling me all that. Is there anything you’d like me to know about how these things affect you now?”
Possible answer #4
Doctor: “Ah yes, trauma and neurodivergence will impact health in some specific ways, and I don’t know a lot about that. If I had all the time in the world, I would research those things to make sure I could provide you appropriate and knowledgeable care, but I’m unfortunately limited in my current understanding. I have some colleagues who are very well trained in these areas, let me see if any of them have space to take you. If they don’t, I can still treat you, but we’re going to be working with less information that would be ideal, so I just want you to know that.”
…I came up with all those responses by myself, just one person sitting and reflecting for a few minutes. I did the work for you.
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Now please, meet me where I am. Don’t tell me for the millionth time to advocate for myself – that’s what I do all day long. When I self-report, I’m advocating, and you drop the ball. If I have to push past that disinterest, it takes even more of my energy to ask you to care about what I’ve just said.
What you call empowerment to advocate, I call labour. Nobody is paying me for the exhausting emotional and logistical labour of self-advocating in every appointment I have. You get paid whether you listen to me or not.
You know your responsibilities, now I am asking you to know your power, and to know yourself. I take the job of knowing myself very seriously. The least you could do is listen to me.