CW: Discussions of the experiences of one person who has a uterus (aka, me) attempting to receive gynecological care.
I never exactly intended to write an entire series on why I joke in my Glossary of Terms that “I know trauma-informed care quite well – in the sense that the ‘care’ I have seen has been quite ‘informing’ of my trauma history.” And, yet, somehow, I have somehow managed to write seven such posts so far. And, I have more than two partially-written ones – at least! – that I could easily find amid my scatter-shot notes to publish later.
How do I know that? Well, that’s easy. Because I’m still feeling a bit burned out on writing about trauma-informed anything since my work continues to ‘train’ me in how to be it. (For those who don’t know, I’m officially an external evaluator, but the kinds of things I externally evaluate overlap enough with healthcare and other systems that I usually end up going through the same kinds of training as the more front-line providers of the actual clients that I am typically evaluating anyway.)
I wanted to provide a follow-up as this week was the week I should have gotten my IUD out. Or, rather, I should say, it’s the week I sort of got my IUD out. But – because I’m a weirdness magnet and nothing can ever be easy – when my gynecologist went to remove the thing, she couldn’t find one piece of it. This means I have to come back again in early March, have an ultrasound to figure out where the rest of it is, and then go through yet another uncomfortable fishing around up there (at best) or minor surgical procedure (at worst) to remove the thing. No, this isn’t common. It’s exceedingly rare, in fact. I’m just blessed with weirdness magnet superpowers. The lowest possible statistical likelihood of everything can and will happen to me. Never tell me the odds because a) I’ve already calculated them and b) it won’t matter. I’ll be the statistical outlier anyway.
So, uh, at the moment I’m the most awkward possible combination of, “Don’t get pregnant, that would be bad, as we’re not sure whether you have enough IUD left in you to actually prevent pregnancy, but you have some. And, getting pregnant with some could be problematic.” Great, thanks. In theory, this doesn’t affect my fertility. It just means I get to spend up to three additional days that I will have to take off of work dealing with something (between initial attempt, ultrasound, and then removal based on finding it with the ultrasound) that takes most women thirty minutes. Yay! (At least I’ll have plenty of additional opportunities for those other two+ half-written posts on trauma-uninformed care to see the light of day?! And, maybe if I’m clever, I can schedule some of those on ‘trauma-informed’ training days?!)
But – since I’m writing this post about trauma-uninformed care, not just ‘medical things in general are dumb’ – that wasn’t even the worst of it. The worst was that – as per usual – the whole experience was the most trauma-uninformed shit show imaginable. I very much wanted to write about why, but I am also very much burned out on writing about trauma-informed anything right now. Thus, I looked back to see if I had any previously written pieces I could either flesh out or slap-up on this blog as-is about the need for trauma-informed care to save myself the mental energy of writing something entirely new.
It turns out that I have many such examples. So many, in fact, that I get to pick and choose which seems most applicable to my current situation. So many, in fact, that I even had a previous one (from April 29, 2019) specifically about gynecologists. Back from when I tentatively had a “So, if I ever were to want to get pregnant, what complications should I be worried about?” impromptu ‘pre-conception’ planning discussion during a routine pap smear.
What was so un-trauma-informed about that session back in 2019 that it made me feel the need to write out a
top-ten top-fourteen (because I’m bad at list posts) list of ‘What My Fantasy of Trauma-Informed Care Would Look Like’ on my tablet in a gynecologist’s waiting room? I honestly can’t even remember anymore! I’d have to consult my reality journal. (There’s been so many examples, after all!) If I had to guess, though, I’d guess that it was probably because it was the first time I ever had an ACES screener arbitrarily shoved in my lap in the middle of a busy waiting room with no preparation or concern for what reliving ACES experiences (and then discussing them with a glorified stranger) might bring up for me.
Why do I guess that? Well, because when current gynecologist (at the same practice, but a different doctor, as the previous one had left during covid) was even more stupidly trauma-uninformed at my appointment this week, she seemed very angry that I hadn’t disclosed I had a trauma history on my previous ACES screener. Which suggests that I was previously given an ACES screener. Probably in April 2019. And, that I had done my usual trick of, “I don’t want to talk about it, so I’m just going to lie and say I have zero ACES. Then I won’t have to talk about it.”
Which, let’s be honest, has worked pretty well for me in the past.
In the pre-covid past, that is…
In our post-covid world, most doctors (like, say, my eye doctor where it hasn’t even been an issue!) have been fine with the idea that I don’t ever feel truly comfortable or safe unless my partner is in the room with me. In my gynecologist’s office – of all places! – where you’d think they might be just a bit more clued in to, “Hey, if we’re going to shove things in places no sane person would ever wish a virtual stranger to shove things into” it might be a bit triggering. And, that having someone there to
let you death grip them until they lose all feeling in their hand hold your hand might “help.” But, no. Weirdly, when calling ahead and saying, “Hey, I’d like to use the valid exemption in my state for PTSD to have another person accompany me to my female health provider,” I got pushback. But, somehow when I instead said, “I use a mobility aid,” I was just (supposedly) automatically granted the exemption. I’m not sure why my use of a mobility aid is somehow a disability at a gynecologist’s office where they intend to touch me in very private places, but my PTSD about being touched in particularly those places and my general ASD and chronic illness issues around being touched in general aren’t, but, hey, whatever works. (I was recommended to see the only OB-GYN specialist who is familiar with my chronic illness because my family does have a history of treatable, but annoying, prenatal complications that are common to that genetic chronic illness. At the time, it seemed like a good idea.) When I made my appointment, the exemption was granted, and the intake person agreed to put Partner’s name on the list for the hospital reception and let him up with me.
And, then, I can only assume they promptly entirely forgot about the entire conversation. Because, they did nothing to follow through on that promise. Thus, they left me at the mercy of a jerk of an off-duty cop subbing in as ‘security’ for the hospital when we arrived. Who apparently felt that ‘scaring the Hell out of me by literally screaming at me’ was the best possible way to enforce ‘hospital policy’ of ‘no guests.’ While I kind of dissociated in the hospital entrance way. And my Partner replied to the off-duty cop’s threats about, ‘and if you try anything, remember this all on camera and I’ll say it was you’ with ‘I understand you have to do your job, but you don’t have to be an asshole when you do. Yes, please record this for my complaint later.’ Good times…
Did I mention I have no desire to let anyone other than my partner touch any places on me without him there to actively enforce my boundaries for me? And, that I was not expecting to be screamed at by some off-duty cop subbing for extra cash as security at a city hospital? So it led to exactly the kind of dissociative ‘no one is properly in charge here’ situation that Partner was there to prevent in the first place? That generic off-duty cop was such a jerk that someone else – entirely unrelated to us both – who just happened to come in at the same time and witness them screaming went and filed a complaint on my behalf. I didn’t even have to. We received a call from the hospital a couple of days later informing us that ‘measures would be taken.’ (But, what does it suggest that that generic off-duty cop treated me – a ‘harmless’ white girl with a mobility aid who turns into a puddle – like that? Knowing that they are also somewhere else an on-duty cop? My gut says nothing good. Just the little I saw of how that cop ‘enforced’ policy in a non-threatening hospital situation suggests to me that they absolutely should not be ‘enforcing’ any kind of law and order anywhere in the city…)
Thanks to the kind assistance of that aforementioned bystander who filled out a complaint on my behalf, mentioned she absolutely understood why a woman wouldn’t want to be left alone in such a vulnerable position, and went up to go inform the third-floor gynecologist’s office what had happened, I did not (as I initially feared) have to turn around and cancel my appointment. Partner was eventually allowed up. And, the appointment proceeded ‘as planned.’
Where ‘as planned’ included the doctor grilling me over and over again about, ‘Why haven’t you disclosed you have trauma before?” and “What is your trauma? I need to know exactly what it is!”
To which – in an utterly ironic ‘score one for all of that dumb trauma-informed training I’ve had to sit through recently’ after all, I guess, reversal – I managed to remember to literally recite the words, “I have recently been formally trained in trauma-informed practices through my work. And, one of the things I was explicitly trained on is that it is not necessary to force a client to disclose the nature of their trauma(s). It is sufficient to ask what accommodations might help and if there are any specific concerns that the doctor should be aware of. I am stating overtly that the only accommodation I require is for my Partner to be in the room with me. He is here. Thus, I do not need to – and will refuse to – disclose anything further about my trauma.”
After a few rounds of that, the doctor temporarily gave up and proceeded with the aforementioned (not entirely successful) IUD removal. And, I assumed that – though the whole thing had been unpleasant – at least my preferences were now known. And, we wouldn’t have to go through that whole thing again when I came back for my ultrasound?
I went off to pay my copay and schedule with radiology. At which point, the doctor tried to get my Partner to disclose my history for me while I was out of the room. WTF?!
And, in perhaps an even bigger irony of ironies than that my stupid ‘trauma-informed’ work training proved to have some actual real-world usefulness, my Partner was so frustrated during that whole separate inquisition that he bothered to look around the exam room aimlessly while trying to collect himself after being accosted to share my history without my consent. And, he happened to see – neatly pinned up on the wall by the doctor’s computer station – the hospital’s official printed policy. Which has been in effect from December 2020.
The official hospital policy which clearly stated that couples being seen for anything related to family planning are automatically entitled to have their Partner with them in the examination room.
I should never have had to say anything about either trauma or disability to earn the right to have Partner accompany me. He was automatically allowed based upon the fact that my IUD removal also included a note that I was required to undergo yet more ‘family planning’ testing and counseling based upon the fact that I had told them I wouldn’t be using any form of birth control after removal. And the fact that I am, thus, officially listed as ‘trying to conceive‘ (ugh) on my charts now.
We never should have had to mention PTSD – or mobility aids! – at all.
Needless to say, Partner took a picture of that policy so we really won’t have to go through this again in March for the ultrasound (and whatever ‘fishing out’ is required after that.)
But, because I’m still pissed about the whole thing, have the following list I wrote. Of what my fantasy for ‘trauma-informed’ care would look like. From April 29, 2019. Because it’s 2021 and apparently my city still doesn’t have a damn clue…
April 29, 2019
It’s almost Ehlers-Danlos Syndrome and Mental Health Awareness Month. I’m sure to forget that within the next two days, but for the moment that is top of mind. Why? Because Awareness Months may be stupid, but at the moment I am very aware of one particular thing that is lacking in our awareness of these conditions. And, it’s the same thing that is lacking in awareness for pretty much any medical issue: any idea of what ‘trauma-informed’ care actually means. (Spoiler alert: it means not asking the unnecessary stuff and actually asking the necessary stuff. It also means speaking kindly when asked and then shutting up afterward.) As we seem to have a long way to go in our ‘awareness’ of trauma-informed care, without further ado, have my fantasy of what an even vaguely ‘trauma-informed’ medical appointment might look like.
- At initial patient intake, the intake coordinator welcomes the patient and asks (preferably both verbally and with printed notes in multiple languages and/or visual media) about the patient’s comfort level with verbal communication and/or need for a translator. The patient intake coordinator also invites the patient to bring someone along whom they trust to speak for them if self-advocacy may be difficult. They note these rights both when making the initial appointment and then again at the reminder phone call the day before the appointment and at intake for the appointment itself.
- The doctor introduces themselves – especially if they are subbing in for the patient’s regular doctor and/or it’s the first appointment – and they spell their name for those with brain fog who might be taking notes because they have had a lot of first appointments and will forget otherwise.
- The doctor asks if touching the patient on any specific area of the body or through any specific types of touch (e.g. light touch for allodynia, specific areas for those with trauma) might be triggering. They further ask if any sensations normally associated with medical treatment, e.g. bright fluorescent lights (for migraine sufferers), cold or hot or pinching instruments (for just about everyone!), or other stimuli (for those with sensory issues in general) might cause the patient to become non-responsive and/or afraid or unable to communicate their limits. They then explain what, if anything, they might be able to do to accommodate the patient for these concerns. And – especially if they don’t have many options for accommodations – they give the patient whatever form of ‘heads up’ is most comforting to the patient before they engage in these triggering or painful procedures. They talk the patient through what to expect as much as possible, either during or prior to beginning, depending upon patient preference. They offer the patient the use of all forms of comfort items, stim toys, friends, or other sensory/mental health aids (head phones, etc.) to minimize the patient’s risk of dissociation or meltdown.
- The doctor guarantees the patient at least 7 uninterrupted minutes to walk through their most recent symptom list. They offer up to at least a guaranteed 12 minutes especially for chronically ill patients in the process of seeking initial diagnoses, who might have many symptoms. And, they are willing to listen to – and consider in their diagnosis and treatment plan – symptoms that may not fit their specific area of diagnosis. (E.g. the GI doctor might consider whether the patient has listed frequent dislocations as an unusual symptom. Because it’s almost like many chronic illnesses are multi-systemic syndromes that cross multiple medical specialties and it will be hard to accurately diagnose the patient unless and until the doctor also thinks across specialties.)
- The doctor conducts their initial examinations, develops their initial hypotheses, and then does a few other basic examinations to further confirm or cast doubt upon these initial assumptions. Including conducting simple, painless tests that may help differentially diagnose syndromes that take 6-8 years on average to diagnose without such simple tests, but which can take as little as about fifteen minutes if the right test is done early on. They also walk through their rationale(s) for their preliminary diagnoses with their patient, and verbally (or non-verbally, if that is the patient’s preferred communication form) indicate the primary criteria upon which they are making their diagnosis. If the patient provides additional information that calls a diagnosis into question – or suggests that some ‘required’ parts of the diagnosis just don’t fit their experience – the doctor stops and listens and potentially revises their initial hypotheses and/or runs more differential diagnostic tests.
- The patient’s mental health is queried sensitively, without re-traumatizing screeners. Patients are informed that they may disclose only those parts of traumatic experiences that they feel comfortable disclosing, and they are explicitly told that they do not need to share details if they are not comfortable. It is sufficient to share potential triggers and what can be done to minimize them, without going into detail about the reasons for those triggers. Questions about mental health are not treated as taboo or outside the norm of regular health questions, and doctors respond kindly and without bias when challenges are revealed. Patients who self-report challenges are actually referred to further treatment instead of just having their symptoms noted on their chart and then subsequently ignored. Potentially triggering questions are only ever asked in a private room, and space is provided for the patient to recoup if discussing these challenges elicits difficult feelings. Patients are never just slipped incredibly triggering screeners in alongside basic intake forms to fill out in a public waiting room. Mental illness is normalized as a real and valid diagnosis that has physical comorbidities alongside being a comorbidity itself sometimes.
- A careful medical history is taken. Meaning the doctor actually writes down all of those things the patient said during their guaranteed seven minutes to walk their doctor through all their symptoms. And, this history is preserved on the patient’s chart and the next doctor reviews it before seeing that patient if in the same practice.
- After the initial diagnosis, the doctor clearly explains the name and purpose of all prescribed drugs, alongside providing clear printed materials on potential side effects of drugs and what might constitute an emergency to seek immediate treatment.
- The doctor spells out the names and purposes of any tests or additional specialists to whom the patient has been referred. And, they direct the patient to where within a large hospital system they need to go – and to whom they need to speak – to make follow-up appointments. They ensure that the patient clearly understands any preparations needed before diagnostic tests (e.g. fasting), and check that the patient has a ride to/from the procedure and a space to recover in if they do not have someone to take them to the visit. They ensure the patient is not left to fend for themselves in recovery. When the inevitable six-month follow-up is scheduled, the patient is given encouragement to track symptoms and actively participate in their own medical journey in the interim to confirm that their symptoms have been fully communicated to their doctor and that the diagnosis they were initially given feels sufficient to describe their ongoing health issues fully.
- The patient has access to their medical records after the visit without hassle. The patient requesting their own medical records is considered normal and routine. Ideally, the doctor even makes these available through an online portal without the patient having to ask.
- The patient is given a kind explanation of their diagnosis and a list of reputable medical and patient support groups to seek further information.
- The patient is given the option to communicate non-emergency symptoms for interim feedback through a portal, phone or email (instead of having to try to remember them for months on end with brain fog.) The patient is also given the option to meaningfully rate their doctors and to give private suggestions, which are then noted on their chart, of things that might aid at their next visit (e.g. low lighting) to avoid having to say it each time.
- Complaints are actually followed-up on by hospital compliance staff who are sympathetic patient advocates. The patient’s assigned advocate actually starts from the assumption that the patient deserves to be treated with respect.
- The doctor shows even the barest modicum of awareness of how the diagnosis they themselves gave their patient might impact their patient’s ability to be medically compliant. And, they do not penalize or refuse care to their patients for literally showing the very core diagnostic issues inherent to their diagnosis. Doctors do not drop patients from care immediately at the first sign of their being even moderately medically ‘complex.’ And, they do not, for instance, do things like institute a ‘three strikes and you’re out’ rule about showing up more than ten minutes late to their psychiatry office and then use that rule to drop ADHD patients from their practice when they know full well that ‘inability to be on time’ is literally one of the diagnostic criteria for that diagnosis! Finally, the doctor shows even the most minute amount of awareness that – if they expect their patients to be ‘productive members of the community’ (bleh!) – they need to help enable them to do that. By, say, not mandating therapy only during working hours on weekdays, but instead offering evening or weekend appointments.
What am I missing? There’s almost definitely at least a #15 in there to make this a valid “Top 15” list-style post…