I almost drowned at a birthday party when I was five years old. Upon arrival at Water Country, New England’s “safest and friendliest” waterpark, I had raced into a crowded pool of seemingly-still water. Little did I know, this was the Wave Pool: a 700,000-gallon tank of water that mimicked the nearby Atlantic ocean.
The wave-generating machine operated on a timer, thus creating waves that rapidly increased in size. I progressively struggled to keep my head above water. Each time I would return to the surface, gasping for breath, another monstrous wave would topple me over.
Underwater, I managed to cling onto something — swimming trunks. In an attempt to stay afloat, I pulled on them, hard. So hard that they fully came off of their occupant. But my efforts to surmount the wave tank were to no avail.
Five minutes later, I was unconscious, submerged at the bottom of the pool. There was a seemingly-excessive number of guards on duty — over a dozen of them — perched in gleaming red chairs that lined the tank’s perimeter as if they were spectators in an amphitheater. Yet not a single guard noticed until a swimmer found me, horrified, and called for help.
The next thing I knew, I was reclined in a poolside lounge chair, breathing through an oxygen mask and flanked by paramedics and concerned swimmers. When I came to, the large audience that had gathered anxiously stood up and applauded.
I was fine. Everything was fine.
Being diagnosed with attention‐deficit hyperactivity disorder at 20 years old was cathartic; everything finally made sense. But I couldn’t stop thinking of that day at the water park, and I grew angry. Just as I had displayed signs of being a distressed swimmer, my ADHD symptoms had clearly presented themselves throughout my childhood. In both cases, the people who were supposed to protect me had failed to do so. I had slipped through the cracks.
My memories of ADHD symptoms trace back to early elementary school. With time these symptoms worsened, but my teachers reinforced that I was simply “ditzy” or that it was “just my personality.” When I communicated my symptoms to my doctors, they reassured me not to worry; it was “just” my anxiety disorder. I had mentioned my suspicions of ADHD to my therapist, who would laugh and respond, “Marina, if you had something, you would’ve been diagnosed in kindergarten.”
In reality, girls with ADHD are underdiagnosed and undertreated for numerous reasons, including gender bias in research. According to the American Psychological Association, girls with undiagnosed ADHD will “most likely carry their problems into their adulthood, and if it is left untreated, their lives often fall apart.”
I initially felt that my healthcare professionals had wronged me. Part of me felt grateful, though; my missed diagnosis had only decreased my quality of life — it was not life-threatening or fatal.
Nonetheless, diagnostic errors are often fatal and are not discussed enough. While policy change and structural reform are necessary, patients can gain more autonomy in their health outcomes by making changes in how they interact with their providers.
Diagnostic errors include diagnoses that are initially “missed, wrong, or delayed.” John Hopkins researchers found that diagnostic errors represented the “largest fraction of (malpractice) claims, the most severe patient harm, and the highest total of penalty payouts.” In the United States, 12 million people face medical diagnostic errors every year, and it’s estimated that 40,000 to 80,000 of these people die due to complications of misdiagnoses. Despite the prevalence of these mistakes, diagnostic errors are understudied.
They are frequently “underreported or poorly reported” as oftentimes patients don’t self-report errors — experts downplay the full extent of them and most hospitals don’t even track diagnostic errors. The rate of errors to “accurate” diagnoses is estimated to be about 5%, implying that these errors affect at least 1 in 20 U.S. adults, while other research estimates that “10-20% of all diagnoses are inaccurate” in the U.S.
Furthermore, this rate of diagnostic error may be much higher for certain populations. Numerous existing disparities in diagnosis are thought to particularly concern race/ethnicity, age and sex. A high rate of patients who have experienced diagnostic error reported perceiving the visible factors of being African American, female and a young adult as a contributing variable to their diagnostic error for even the most serious cases, such as strokes or heart attacks. The maternal mortality rate, which is disproportionately higher for Black, American Indian and Alaska Native women and increases with age, has also been associated with missed or delayed diagnosis.
How can we learn to trust our providers, our hospitals and the health care system as a whole? According to the National Academy of Medicine, systemic racism and institutional bias have been shown to “(manifest) in lower-quality healthcare.” Additionally, the U.S. has an extensive history of medical racism and malpractice exploiting Black Americans, Native Americans and Puerto Ricans, so it is understandable that minorities tend to have higher levels of physician distrust.
There has been an increase in interest and understanding in the complexity of diagnostic error over the past few years, and the ECRI Institute has even labeled it as “the #1 patient safety problem in healthcare today.” The Society to Improve Diagnosis in Medicine and over 60 other health care organizations are collaborating to reduce both health disparities and diagnostic error. But individuals, especially members of communities that have been historically abused through medicine, may reasonably remain skeptical of their health care providers and feel powerless to the health care system.
As patients, we are often instructed to be “consumers” of medicine, but no one ever seems to tell us what that means. Self-advocacy is the key to gaining agency in your diagnosis and health care treatment, and here is what that looks like.
Use differential diagnosis to confirm your diagnosis: Think like a detective, eliminating clues to reach a conclusion. When you receive a diagnosis, ask your doctor for their steps in reaching the diagnosis. Ask for all of the possible diagnoses that your doctor considered and why each one was eliminated. In this process, you could realize that a potential diagnosis was falsely eliminated.
Don’t be afraid to take notes. Write down the names of the rejected diagnoses and any other information you find important. In case you later suspect a misdiagnosis, you’ll have a backup plan.
Prepare for your appointments like you would for an exam. Come with an idea of your expectations, any boundaries you want to have and questions. You have the right to decide what your treatment plan is. If you’re not comfortable with a proposed plan, ask for more information or other options.
Ultimately, trust yourself and your body. If something doesn’t feel right, vocalize it to your provider or someone who you trust that will help you take the next steps.
Additionally, don’t be afraid to get a second opinion. You deserve to feel respected and comfortable with your provider. Sometimes it takes many tries to find the right person.
While you probably cannot singlehandedly resolve the “diagnosis crisis,” you can learn how to consume health care to your advantage. The cracks in the system may be, in reality, gaping holes, waiting for an unlucky soul to stumble upon one of them. You might find these cracks in waterpark wave pools, in doctors’ offices and other places where you least expect them to arise. And once you learn how to navigate these spaces, you might gradually rebuild your trust in them. Medicine is one of humanity’s most important creations, so it must be equitable and accessible to all.
Marina Wagner can be reached at email@example.com.
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