I held a tissue over my face with both hands, pressing my fingers gently into both eye sockets to catch water before it flowed down my cheeks. I breathed in as waves of emotion erupted faster tears and a scrunched up face to hold them in.
I had begun crying mid-visit. Again.
Two years before, I had sat in the same chair and cried the same tears, but today I felt different. Stronger, in a way. Less afraid. The tears felt good.
I heard the doctor stop typing and swivel their desk chair to face me.
I breathed out.
They asked, “Did I do something?”
I’d just finished giving a summary of the previous two years; the dark years, I call them, during which I saw a psychiatrist assigned by a county behavioral health program after I lost private health insurance. That psychiatrist’s main goal was to prove her patients were improving, and she did so by trying to reduce my medications every visit. For the past two years, appointments were dreadful; I’d approached each of them with the sole goal of fighting to maintain my current dosages and medications, all the while never improving. This doctor was more focused on external reviews than on my chronic mental illnesses. I felt like a quota that must be reached.
There was no trust.
I had gotten through those two years with unwavering resignation, waiting and hoping for Social Security Disability (Insurance) to be awarded so I could become a Medicare patient and return to my preferred psychiatrist, the one who was now watching me blow my nose and awaiting my answer to: “Did I do something?”
Behind the veil of white tissue, thoughts flooded my mind about being an incurable disease patient whose primary job is to navigate the healthcare system with doctors who don’t care enough. The labor to feel seen is unrelenting and overwhelming. I thought of how rare it is for a doctor visit to feel good, to not be rushed, and to be a safe experience. I wondered if Dr. C knew what I was going to say.
I took a deep breath and looked at the wall, my body folded sideways in the chair. I said, between sniffles, “Yes, you did do something. But I’m not crying because you did something bad… I can’t tell you how validating it is to have a doctor who sees and treats me as a whole person.”
My tears were of relief, an outpouring of all the vulnerability I’m used to bottling up as a professional patient accustomed to sterile environments and dirty medicine. Tears just get in the way, usually.
Dr. C didn’t quite know how to respond. My tears dried, I blew my nose again, and we continued the appointment.
This had turned into a medical reunion, a rejuvenated clinical partnership that had been temporarily fractured when my insurance changed. I had been waiting for this moment ever since I left the same office two years ago in turmoil, terrified of what would happen to my mental health after losing my most trusted doctor in the midst of crisis.
I had been waiting to feel seen again.
During the appointment, Dr. C held all my symptoms, fears, experiences, and more in hand, viewing it all from a birds-eye view and noticing where diseases, symptoms, and medications intersected; all while openly educating, guiding me along with well-reasoned medical and clinical information, and accepting my knowledge as equal to theirs. When discussing concerning symptoms and my hesitancy to add more specialists to my rota, they reminded me multiple times, “Many doctors will see that you are young and you look healthy, and they will not take into consideration the reality of your severe disease(s). We need to establish baselines now, because even if you’re presenting in clinically normal ranges now, they may not be normal for you.”
I felt safe. I felt I could be open, honest, and vulnerable about all my symptoms, medications, and emotions. I felt seen. I could simply be a sick patient – an informed one, at that – and know that the focus of the visit was my sickness and not the doctor’s desire for control or rightness. It felt exactly as I imagine the perfect doctor-patient relationship: a partnership between two colleagues focused on health. The walls I’ve had to build over years of practiced medical self-advocacy melted into bridges to collaboration and mutual problem-solving in mere minutes.
There was trust.
Later, I joked to a friend that I’d found the ‘god of all doctors.’
If all my specialists were like this psychiatrist, I would spend less time advocating for my treatment needs and more time collaborating equally on my care with physicians willing to learn alongside me.
Later, I kept thinking about how deeply the appointment had affected me.
In therapy an hour later, I had laughed. I never laugh in therapy, it’s one of my self-imposed ‘never do this in therapy’ policies. Because, duh, therapy is supposed to suck. I’m joking, of course.
Dr. C had done something magical that I couldn’t explain, yet understood on a primal level. I just knew that I felt whole again and, simultaneously, powerfully broken. And it felt so relieving to exist in those two realities at once in the presence of someone whose degree earned them power over my treatment options. I felt valid.
As someone with an incurable chronic disease with a complicated medical resume, I spend a lot of time in the medical world. Most of the time, my focus is proving to my practitioners that I’m indeed as sick as I am – my youth, gender, and invisible nature of my diagnoses means doctors are quick to assume I’m healthy despite a chart full of evidence of complex diagnoses, medications, and symptoms.
I once had a doctor say, “You’re pretty healthy aside from your ankylosing spondylitis,” as if good health could somehow be extracted and separated from my incurable systemic disease.
Too often, as a professional patient, I’m the manager of the complex layers of my multiple disease realities during appointments, reminding doctors I have X disease and that I’m taking Y medication, to watch for Z side effects and keep in mind that A co-morbidity is common with B diagnosis, and C symptom is worsened by D treatment, and so on. I spend more energy proving I need calculated treatment than receiving it.
I’ve learned to speak the same language as doctors after nearly a decade of living in an incurable body, often educating my own specialists about diseases I’ve researched more than they have. I’ve learned to strategically condense three months of pain, fatigue, and sleeplessness into an elevator speech to guide efficient treatment decisions during 15 minute appointments.
I’m used to having no other option but to be my own medical expert.
As I thought more about the reunion with my psychiatrist, I thought of how I didn’t have to be my own case manager with Dr. C.
I thought of how rare it is for doctors, especially specialists, to see patients – especially those of us who live with multiple, severe lifelong diseases – as people with valid complicated emotions and medical needs. The complexities of our lives involve more than lab results and prescriptions; they involve investigation into our relationships with our diseases as much as our willingness to play medication darts.
I thought of how rare it is for specialists to delve into medical territory that doesn’t technically belong to their specialty so they can take a whole-body, person-first approach to medical treatment that leads to better overall treatment outcomes.
The importance of having medical practitioners who treat the whole patient is a vastly overlooked topic, especially in western medicine, and especially as medical care has increasingly become a calculated hard science. There is often a significant disconnect between patients’ and doctors’ perspectives of appropriate care.
Doctors who facilitate better communication arguably see better treatment outcomes with their patients. In other words, patients by and large are more likely to participate in and pursue better treatment if they feel seen and heard by their physicians. I’m speaking mostly from experience here. But, to back myself up, in an article arguing the importance of taking the time to listen to and collaborate with patients, physician Lana Awdish and health services researcher Len Berry write,
“Actively listening to patients conveys respect for their self-knowledge and builds trust. It allows physicians to assume the role of the trusted intermediary who not only provides relevant medical knowledge but also translates it into options in line with patients’ own stated values and priorities. It is only through shared knowledge, transmitted in both directions, that physicians and patients can co-create an authentic, viable care plan.”
Dr. C embodies this discourse. There are complementary treatments that can’t be reflected in medical charts, and a person-centered bedside manner is one of them.
Not only did Dr. C give me back some of my body autonomy and a glimpse of hope in the medical system; the knowledge that a doctor is really on my side and doing everything (more than they should) in their power to help me takes a huge load off my professional patient shoulders. Every chronic disease patient needs at least one physician they can truly, fully lean on and trust with their care.
We need more Dr. C’s in the world, and soon.
This blog post references the same psychiatrist who was featured in my blog post from 2017: “The Doctor Who Renewed My Hope in Doctors.”
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