It wasn’t always this way. I used to trust that doctors could, and would, cure me. They knew all the right answers, whether I needed medication, and which medications would fix me. Going to a medical establishment carried the promise of making me feel better within hours or days.
That was before I became ill with a chronic disease, Ankylosing Spondylitis. That was before I was diagnosed with Major Depressive Disorder, Anxiety, and PTSD.
Many believe, like I used to, that visiting a doctor means getting better. But doctors who treat permanent diseases have a tough job: they stare down diagnoses every day that they can’t eradicate. There’s a huge difference between curing a temporary malady and managing a lifelong disease. And to choose to be a doctor who treats patients with incurable diseases takes special courage – or a desire to make a considerable amount of money.
Doctors leave medical school with heads full of practical clinical terms: elevated T-cell count, HLA-B27 positive, elevated bilirubin, polyenthesopathy, erosion of the spine with bone calcification. But, unless they share our diseases, they do not know what it is like to be in our bodies; to feel our forever pain, our fatigue, our fears. They rely on us to paint a picture of what it actually feels like to have a high T-cell count and polyenthesopathy, but many of them forget to ask, and when they do, sometimes they don’t know why they need to know what the patient is actually feeling. If they’re smart, they try to help us manage our pain, fatigue, and fears by prescribing treatments based on what they see in lab, X-ray, and MRI results, with final decisions based on the symptoms we present.
Yet, every patient and every doctor is different. Some patients desire a whole-body approach: treatments based on test results as well as symptoms. Some want a say in every single decision. Some want to know all there is to know about their conditions and treatment possibilities. Some just want the doctor to decide everything.
Some doctors automatically take a whole-body approach. Some automatically lean towards a collaborative approach with a strong doctor-patient relationship. Some are heavily clinical and want to treat everything based on test results and quantifiable evidence, not really taking undiagnosable symptoms into account. And some take an authoritarian approach, wanting to be in complete charge of the patient’s care.
We chronic disease patients often feel we are fighting a war with any and all doctors when perhaps we just haven’t found a good match. This has certainly been the case with me. And I bet many doctors feel they are fighting a war with many of their patients.
My hackles have grown used to raising as soon as I enter the force-field of a medical establishment. My default is to approach an exam room with one hand holding on to a friend for support and the other shielding my heart – I fully expect that the doctor will unintentionally invalidate my experience as a patient, and in doing so erect a glass wall between us that taunts my desire for collaborative treatment decisions and transparent information. Because I feel I have to fight to be heard, which I do, I’ve come to expect that after each appointment I’ll leave licking my wounds and hyperventilating, ready to curl up in my closet to shield my invisible scars from the world.
First impressions matter a lot, especially for those who see doctors regularly.
Recently I had a first appointment with a new psychiatrist. As they walked down the hall to the office I noticed the way they carried themself – broad but accepting shoulders, a confident but not cruel gait, clothes that work for any body, and a calm power that radiated with just the right amount of welcome paired with cool professionalism. Stocky isn’t the right word – rather, grounded and aware. I followed behind and immediately felt the need to square my own shoulders and command my own presence in the wake of their aura. Additionally, to have the actual doctor to come out to the waiting room, rather than a nurse, to receive me back to their office was such an amazing surprise.
They sat with their legs resting on the floor shoulder width apart and knees comfortably pushing against either side of their office chair; hands clasped as they commanded my eyes to theirs. I have a lot of trouble looking directly into people’s eyes, but this doctor earned my trust and respect soon after we got past our initial summary of my problems and a little hiccup regarding the erred idea that I could have bipolar disorder (which would be fine, I just don’t have it). They had a calm peace that emanated years of experience in truly listening and treating a patient as a whole person.
Over an hour later – I repeat – over an HOUR later, never feeling rushed or imposing, I left the office with new mental diagnoses finally formally recognized (to help with my SSDI fight). In one hand I held a medical journal article they printed out for me to research possible medications to help me sleep (because, they said, if I Googled this stuff, I wouldn’t find information about these specific medications being used for PTSD and sleep), and in the other hand an appointment slip to return in a couple months – because that’s the next earliest opening. This is an appointment I actually look forward to.
For the first time in years, I feel confident that I can trust a doctor to do everything in their power to help me be a truly cared for, informed, and respected patient with an equal say in decisions about my life. For the first time in years I feel I can let my guard down in a doctor’s presence, knowing I am not walking into an appointment needing battle gear to fight for the amount and quality of treatment I deserve. For the first time, I do not find myself second-guessing any of what the doctor claims to have read, because I KNOW they read what they said they read. This is a doctor who presents all the facts clearly and displays no veil of clinical coercion. I left knowing my desires and decisions were respected as an equal partner in my own care.
This doctor doctored without letting down the wall of professionalism, without crossing any lines toward manipulation, while also portraying an openness to my humanity.
And for the first time, I felt awed that I was in the presence of a medical professional who silently commanded my awareness that they need no gender label. “Doctor” will simply suffice, and I’m delighted that I get to have this doctor who lies somewhere in the fuzzy realm beyond categorical boxes.
I’ve found a doctor who matches my style in more ways than one.
And good matches are hard to find.