I’ve been working for the last couple of years to get my ducks in a row regarding medical care. For the last 6 months I’ve had a better paying job that has enabled me to pursue the healthcare concerns that I was pushing to the back burner in favor of you know, paying rent or buying groceries. Just minor roadblocks, right? In this pursuit of health I’ve learned a lot. I’ve learned that I must aggressively self-advocate. Especially if the care required will brush up against trauma triggers. Because I was raised in patriarchal evangelicalism and then spent 10 years in an authoritarian style cult, my default (triggered) disposition is to give over my autonomy to people I perceive as “authority figures.” I will slip into people-pleasing mode so fast I won’t know what hit me.
I came across a tiktok recently (@healwithruby) that put it perfectly, “When your basic needs were not met as a child you learned from your early care takers that you were not important. Unconsciously you decided to mimic them by abandoning yourself as well, causing your personality not to develop. You learned to survive by pleasing others and mirroring everyone around you, as a result you feel unworthy without outside validation. So here you are discovering who you are at 33… anyone else?” Me. Hi, I’m the problem, it’s me. Sidenote: mental health tik tok has been so enriching and validating to me.
I went through a few Drs, mentors, and even a couple of therapists before I found a therapist who refused to accept my autonomy when I served it up on a trauma-dump-platter. Some previous practitioners were all too eager to take up the mantle of “wise one” and dole out directives to “live my most healed life in 12 easy steps.” I usually ended up terminating those professional “partnerships” after my boundaries (which I didn’t know I was allowed to have) were violated. So when my current therapist and I were getting to know one another, I found it particularly frustrating that she didn’t roll out a 10 point plan to get me “fixed.” I couldn’t believe that when I didn’t know what to do to feel better, sometimes she didn’t know either. She just consistently stayed present with me in the places of pain, reassuring me I was not alone and empowering me to find my way through. She holds up a mirror to show me I have what I need most already within me. And because she holds that space for me I’ve learned that I have autonomy with authority figures. I’m allowed to have needs, to make them known and ask directly for what I want out of my relationships – especially the ones I’m paying for.
After some medical mishaps where my providers dropped the ball in some big ways (failed to give me diagnosis and treat me for over a year) I took my healthcare back into my own hands. The night before I went to see a new provider last year I wrote out a 3 page “Medical Manifesto” that detailed what I needed them to know about me and my history and what I expected out of medical care. I took a friend with me for moral support to make sure that I had someone who could speak for me if I got triggered or too emotionally flooded to communicate effectively. I got lucky with the Doctor I saw that day and she was an absolute DREAM. She set the standard for what I expect in terms of collaborative care. She wasn’t “trauma-informed” but she was sensitive to my concerns and eager to learn how to best support me.
That being said, I’m perpetually suprised to discover how many people who work in medicine of one kind or another get a deer-in-the-headlights expression when you ask them if they are trauma-informed. As a massage therapist we had a whole unit of training in how to navigate caring for traumatized clients. If they’re teaching us these principles in trade school, one would hope that medical professionals are getting more than a units worth of education… but apparently not?
So I continue to self-advocate and even educate. Which, lemme tell you, is exhausting as hell. I’ve had some more emergent dental issues pop up recently. I learned the hard way that the first dental office where I tried to establish care could not accomodate me and that professional tie was severed swiftly. So I kept looking. I found a Dr who ticked all my boxes; all female staff, sensitive to anxieties, didn’t approach me from behind or touch me without explanation or permission. Consent is sexy, no matter the context. But I quickly learned that my issues couldn’t be handled by that office and was referred out to a male Dr. I didn’t know whose office I hadn’t vetted. I’m in a debilitating amount of pain and didn’t want to extend the timeframe for relief any more than necessary, so I complied, putting my misgivings to the side. Pain will turn a chooser into a beggar real fast.
I will be the first to admit that my threshold for challenging situations is considerably lower when I’ve been in pain for a week. I started crying almost as soon as they brought me to the exam room and didn’t stop until I got home. My intake paperwork disclosed that I have PTSD and detailed a couple of specific, relevant triggers they should be aware of. Despite that disclosure I was triggered right away and realized I’d have to ask for more accomodations more clearly. When I asked the nurse not to approach me or address me from behind, I had to further justify that request and inform her that if she were to stand behind me – even silently – it would increase my anxiety. Then I had to explain to the Dr. – repeating myself three times because he didn’t believe me the first time – that they don’t just hand out xanax to people anymore, regardless of how often they have panic attacks. At least in the state of Tennessee… Oh, and then he had the audacity to ask me the source of my PTSD. I was dumbfounded. It took me a moment to gather myself enough to say I wasn’t comfortable disclosing that information… he clarified that he was trying to find out if my PTSD was sourced in medical settings. I told him no, but that I had been re-traumatized by practictioners who refused my requests to stop or take a break when I needed it. It’s a valid question with the qualification but a horrendously inappropriate question otherwise.
Five years ago I didn’t have the language to articulate what I needed in medical settings or why. I generally avoided going to the Dr or the Dentist unless I was having an emergency. I made the very wrong assumption that all gynelogical practices would at least be trauma-informed; they are not. Knowing I would have to face triggers that could cause flashbacks and re-traumtization were huge barriers to me receiving preventative care. If I could have expected Doctors and their staff to be trauma informed, I might have sought care sooner and wouldn’t be in the position of now having to undergo oral surgery and create more of a burden on the healthcare system. To date the only place I’ve received trauma-informed care was Planned Parenthood. God bless Planned Parenthood for doing the bare minimum and still setting the highest standard.
All of this to say that I don’t find it very fair that the impetus is on the trauma survivor to self-advocate and educate medical staff on trauma-informed care. But then, what about being a trauma survivor is fair anyway? I share this experience because I know I’m not the only one with it – not by a long shot. And I want to brainstorm ways to fill the gap. What can we do as survivors to break down the trauma-specific barriers to getting the help we need to be healthy? Can we have a seminar? Can I create some kind lunch-and-learn resource that is easy to use and have sexual trauma resource centers sponsor lunch-and-learns at medical offices? I’ll create a couple of pages with infographics and good rules-of-thumb for interacting with known or unknown trauma survivors. I’ll make a power point. If I can’t make inroads with medical offices, how can I help other survivors to self-advocate? Can I create a resource for us? What would you need to prompt your own “Medical Manifesto”?
I’m tired of medical staff either patronizing me or acting afraid of me when I disclose my PTSD status and ask for reasonable accomodation. I deserve healthcare. And I deserve to get it in a fashion that won’t override my autonomy, neglect my consent, cause me to be re-traumatized and set me back on my road to recovery. I refuse to diminish myself any longer so that medical staff are not inconvenienced. It’s the least they can do.
Who’s with me? Share your thoughts and ideas.
Rebekah Hopes 