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This story is from the Anamnesis episode called Rx for Reality: Clinicians Confront Medical Gaslighting at 15:08 in the podcast. It's from Kara Wada, MD, a clinical assistant professor of allergy & immunology at the Ohio State University Wexner Medical Center in Columbus. She is the CEO/founder of the .
Like you, my memories return in snippets of images, sensations, and emotions. Each with an evolving impression and impact as I continue to grow and evolve, both as a physician and a patient. In hindsight, I see these recurrent memories as puzzle pieces. When viewed individually, each is a tiny aspect of a larger picture. Then slowly, the pieces multiply and began to fit together. A revelation. A diagnosis. A new way forward.
The first piece. I'm about 19, in college, sitting at the local fast-food Chinese restaurant for lunch with my dad. I went to our local liberal arts college and looked forward to an occasional daddy-daughter lunch date, a tradition since I was 4 or 5 years old. I felt so loved, cared for. But, I also recall feeling an internal undercurrent of fear and anxiety. I recall picking at my cashew chicken, avoiding any of the undercooked onion and broccoli, knowing that a tiny bite of these foods would leave me in digestive agony during my afternoon chemistry lab. And yet, not sure why I was avoiding them other than to avoid the intense pain that would ensue if I ate those veggies, I never asked anyone about these symptoms. I just carried on, ignoring my body's calls for help.
Exhausted All the Time
The second piece. I hurt, physically. Exhausted all the time. Constantly dismissing the aches and stiffness in my body. As a med-peds intern, I knew I would be tired through the countless hours of walk-rounds and call, slowly moving from room to room, moving as a herd. At 26, I was looking for every opportunity to lean against a wall or the COW, the computer on wheels, to stretch my stiff low back. Looking back, I was not only hurting physically, but I was constantly in a state of overwhelm and imposter syndrome.
I had no concept of self-care or self-compassion. At one point I suffered with UTI [urinary tract infections] symptoms through shifts, not wanting to leave early to get the necessary care. My habit now ingrained from years of ignoring my body's calls for help.
Then, my body gets louder. I realize I have no choice but to go to the doctor as the pain increases to new levels. My internist recommended exercise and stretching. She suggested I take care of myself. She also knew, having been through medical training herself, that I was not likely to return soon. Her best opportunity to help was now. So she ordered a metabolic panel, lipids, and a CBC [complete blood count].
What I do recall was that my total protein was high -- and yet, my albumin was normal. She asked me to get it rechecked. But I never did. Instead, I kept leaning and stretching throughout my herding life. Always making sure to have a stash of ibuprofen in my white coat pocket.
The third piece. My doorknob complaint to my ob/gyn. I was nearly done with residency now, newly married and visited the doc I had known the longest, and I trusted the most to be vulnerable with. As our appointment ended, and her hand already on the doorknob, I'm sure her mind was already thinking of that next patient. I finally blurted out why I was actually there. It hurt after sex. I knew something wasn't the same or normal. Rather than stopping and getting curious (why is my 28-year-old newlywed dealing with this change?), the doctor I trusted countered with a quip and a recommendation to use more lube. The body's call now verbalized to my trusted source for help goes unheard.
Three years ago, the final piece. I am now 35. A mom of two beautiful girls. Now fully adept at ignoring my body's increasing calls for help only magnified with motherhood. Adapting as other symptoms arise where I'm no longer able to wear contacts or mascara for fear of looking like a raccoon by mid-morning. Scouring the local Sephora for the best lip balm available to heal my chapped and bleeding lips. I noted my back pain mysteriously vanished with each pregnancy, only to return with a vengeance postpartum. The list of food intolerance grew. And idiopathic anaphylaxis, as an allergy fellow, wasn't even enough to shake me awake.
I am at the dentist. The hygienist is doing my routine cleaning. "Your mouth tissues look dry." "Hmm," I reply. "Maybe I should get that checked out."
The Puzzle Pieces Snap Together
In that instant, the puzzle pieces snap together and reveal the full picture. Sjogren's. Oh the irony, that it took such a small comment to get me to stop gaslighting myself.
I finally summoned the courage to ask my internist to order the labs. I rehearsed, nervous to be "that patient." And she was skeptical, but finally -- somewhat reluctantly -- ordered the labs I asked about, all while also trying to reassure me that my symptoms were just from being a doctor who is attuned to all types of symptoms and diagnoses.
As I waited, the anxiety mounted. I'm healthy. I'm not a patient. I'm invincible. I'm too busy to be sick.
A diagnosis. The email notification from the patient portal dinged in my inbox. I see the red arrow next to the SSA result of the ENA [extractable nuclear antigen] panel. Relief and validation. Then fear. More labs confirmed systemic Sjogren's.
A follow-up call with a colleague, my friend, and now my rheumatologist signaled the start of a new daily regimen and hope for improvement. And I doubled down.
I started my hydroxychloroquine determined to show Sjogren's who was boss! Exercise, check! Green smoothies, check! Superfoods, check!
Then a few months later the fevers hit. Probably just another daycare bug I picked up from my kiddos -- but they persisted. The fatigue was worse than ever. I felt like I was walking through knee-high mud with a heavy backpack on. Every small task felt like a bother. My body and my mind had nothing left to give. I was going through the motions, both at the office and at home.
A week or so later, my urine turned dark. Four-letter words tumbled out of my mouth. Back to the doctor for more testing. After countless tubes of blood and imaging, multiple group texts and emails with colleagues, the results were in and a few weeks later, I was in the pre-op area, waiting for my liver biopsy.
All the while, realizing that nothing can make you feel less in control than being buck naked in a hospital gown. I have a photo from that day I took and I look back at it from time to time to remind myself of how far I've come. Although I have a smile on my face in that picture, the warm, pilled up blankets and friendly reassurances from the pre-op staff were not enough to stop my teeth from chattering.
It wasn't just the cold. I was scared. Down to the bone, scared. Scared because every inch of my body itched like a million little bugs crawling under my skin. Scared because my skin had a yellow hue to it. Scared because I suspected my liver was failing and we had no idea why.
Was it an infection? A medication or supplement I took? Was it something even more serious, like cancer? I hadn't slept. I was exhausted.
Then the Answers Came
And then the answers came. It was an injury from my superfood supplement. As it turns out, superfoods aren't super for everyone. Now with my mind at ease about my survival and having a path forward, my emotions moved to anger. I was pissed off.
Why did I have to summon such deep courage while suffering and go to great lengths to advocate to get the care I needed? And I know the system. I knew who to call. I know how to be heard in big medical systems. I saw my privilege in a whole new way.
It was then that I realized firsthand how difficult it is for my patients -- for all those that need medical care. Despite living in a time where we know more now than ever about the human body, too often patients leave medical offices feeling frustrated, confused, and overwhelmed. Navigating the healthcare system can leave us feeling powerless. Those who have vague symptoms and normal labs play the game of hot potato being passed from one specialist to another.
We as doctors are quick to close the patient off given our busy schedules and pressures to treat and move on. We unintentionally gaslight. We inflict clinician-associated traumatization. In a recent study of patients with Ehlers-Danlos, 92% reported feeling invalidated by their clinicians.
I believe there is another way for us. When we lean in, when we are curious, our patients have more opportunities for answers and healing. At its most basic, healthcare is an exchange of information between the patient, an expert at their lived experiences; the physician, an expert with their education and experience with treating countless people. It takes time, energy, and work to form these trusting, therapeutic, and healing relationships.
I've seen this firsthand. After I found myself as a patient, I realized how much each doctor-patient exchange has power. Power to heal.
I have felt the magic that arises from our mirror neurons when we communicate; we connect and co-regulate. When this exchange goes well, we see the synergy that arises from it. This is in part the placebo effect.
At our deepest, most biologic levels we're all yearning to be seen, to be heard, and to be believed. It is only through my own healing, both physically and emotionally, that I have a renewed passion for leaning in, to staying curious, and to realizing that even though we know more now than ever, our work as physicians continues. When we stop gaslighting ourselves and learn self-compassion, when we start healing the healers, the ripple effects raise the level of healing for all of humanity.
Check out the other stories from the Rx for Reality: Clinicians Confront Medical Gaslighting episode , including "When a Neurologist Asks for an MRI, You Order an MRI" and "Unmasking a Nurse's Journey Through Long COVID Gaslighting."
Want to share your story? Read the Anamnesis Storyteller Tip Sheet and send us an email at anamnesis@medpagetoday.com.