What do I have to do to get your attention? That’s the question I kept asking myself every time I argued with another doctor who dismissed my concerns or waved off how I was feeling for something that would not compare to the pain my body was sending as a call for help.
My experience with the healthcare system forever changed me. Even in a career as an ICU nurse, I experienced constant medical gaslighting that led me to an uphill battle where I fought tooth and nail to get someone to actually listen to me. All it took was one doctor and 63 medical visits before I finally got the diagnosis I’ve known all along: a brain tumor.
My story is uniquely mine and yet it isn’t. Seventy-two percent of women say they’ve experienced some form of medical gaslighting and 71 percent had doctors telling them their symptoms were imagined. Medical gaslighting is especially dangerous for people of color who are more likely to have their concerns disregarded by their healthcare providers.
Medical gaslighting took a toll on my body for two years as my symptoms got worse. And while I eventually did get the care I needed, the whole ordeal cost me greatly. I was emotionally exhausted from being my own health advocate and the growing tumor cost me partial vision in my right eye.
I remember the fall of 2016 for two reasons: my mother was dying and the smell of frying steak. I would wake up at 6am every morning to that strong smell or sometimes restaurant exhaust. The only problem is that I don’t live near a restaurant. As an ICU nurse, I’ve learned about phantom smells where you smell something that isn’t there. These phantom smells are also classic neurological symptoms typically caused by three things: a sinus condition, Alzheimer’s disease, or a brain tumor.
I was personally hoping for a sinus infection since my work with a management consulting firm at the time had me traveling 45 weeks a year. There was no time to deal with Alzheimer’s or a brain tumor.
Over the course of 2017, I made repeated trips to my primary care doctor as the phantom smells continued to linger. I mentioned to her the three causes I believed could be triggering the smells and her prescription was to use nasal spray. When the nasal spray didn’t work over months, her recommendation was to use more of it. At no point did she make a referral to an ear, nose, and throat specialist even though I kept telling her the nasal spray was not working.
As 2017 progressed with the useless nasal spray, I developed more symptoms. As I would lay down, it felt like a brick pressing on my forehead. Believing these two are connected, I asked her to order an MRI. Her response? She simply waved her hand in the air and said “You don’t have a brain tumor.”
My doctor was hearing me, but never listening. For another couple of months, I continued using the nasal spray with no improvement. Then my mother died.
My mother and I were very close and her death devastated me. As I was grieving my loss, another series of symptoms presented itself. My right eye began feeling like it was on fire. Behind my eye also grew an intense pressure that felt like my eye was going to blow out of my head. I relayed my concerns to my primary care doctor and she dismissed me again since I didn’t show up with typical symptoms like a headache or a seizure.
For more than a year, I knew I was on my own. I began looking for another physician who would take my symptoms seriously. The search was on.
Despite my experience in navigating a complicated academic medical system, it took another two to three months to schedule appointments with specialists because my PCP made no referrals. The ophthalmologist I saw told me my burning eyes were from dry eyes. His prescription was to use eyedrops more than four times a day.
I then saw an ENT who did an evaluation of my sinuses and found them all clear — ruling out any sinus infection. This was the first doctor to confirm my olfactory hallucinations are a classic neurological symptom and suggested I go see a neurologist. I eventually managed to make an appointment with a neurologist who was a Parkinson’s specialist and when I began explaining my symptoms he began doing a Parkinson’s evaluation. When I realized what he was going for, I told him to stop. “You are a Parkinson’s hammer looking for a Parkinson’s nail,” I recall saying. Once I explained that all I wanted was a head MRI, he had the same reaction as the PCP. He waved his hand in the air and told me there was no way I had a brain tumor. Eventually, I convinced him into ordering me one so we can rule out a brain tumor as a cause.
Two days after the MRI, I’m at the salon getting a haircut when my doctor calls me. I remember hearing the shock in his voice when he blurts out that indeed, I do have a brain tumor. Fortunately, it was benign, but since the tumor was growing and pressing behind my right eye it needed to be removed.
Though Lady Luck was smiling at me. One of the top neurosurgeons skilled in removing the type of tumor in my right frontal lobe was only a subway ride away in Boston.
On April 10, 2018, the neurosurgeon cut a four-inch hole in my skull and removed an egg-sized tumor. I was elated because I thought the hardest part was finally over but I was wrong.
This type of surgery can cause concussion-like symptoms after the operation. I slept for 22 hours a day for two weeks. I couldn’t remember how to make toast or coffee. As an avid reader, it took months before I could comprehend words on pages.
Four years after brain surgery, my full executive functioning returned to how it was before the operation. However, I had brain stamina issues where it would take me 20 minutes to write out checks and then I would need to sleep for five hours. Eventually, this too all resolved in time.
But right when I thought I could put this chapter behind me, the vision in my right eye suddenly dimmed as if a curtain covered it. Since the tumor had grown and pressed on the back of my right eye for so long, once that pressure was eliminated it caused my retina to peel off like wallpaper. I had another surgery to repair a detached retina and while I regained my vision I will never be able to see as clearly as I could before.
I do sometimes wonder if my medical journey would have been different if my PCP had not quickly dismissed the possibility of a neurological problem. When I transferred my medical care to a different medical center, I obtained copies of my medical records from her office where the note she entered that day I asked for an MRI is whether I may have had dementia. Yet she never mentioned it to me or made any further evaluations. With my tumor being slow-growing, it’s possible I would have not lost partial vision in my right eye.
But there is no point in ruminating about the past. If anything, this journey has made me more appreciative of life. I take nothing for granted and I’m more alert to the small things in everyday life that bring me joy and contentment.
I’m certainly one of the lucky ones as I came into this experience with inside knowledge of how the healthcare industry works. Not everyone has that advantage. If anything, remember this: You hold the power in the physician-patient relationship. It’s your health, your body, your medical record. At times, it’s necessary to question your provider if you don’t understand something they’re saying or agree with their conclusion. At the end of the day, you know your body best and if you feel what you’re told isn’t quite right then you need to be your own advocate and seek out your own answers.
Christine Spadafor is an experienced management consultant who has worked extensively as a Board of Directors advisor to Fortune 500 C-suite executives and is a lecturer and presenter at Dartmouth and Harvard Medical Schools.
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