June 11, 2024
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Photography by Oleksii Syrotkin/Stocksy United
No one wants to be labeled “difficult,” so when you’re constantly exposed to medical interventions, it often seems easier to go along with doctors’ demands.
The enduring presence of long-term chronic illness encroaches on our mental health, overexposes us to medical interventions, and exhausts us with constant demands on our time and energy.
Sometimes, these combined pressures morph into “good patient syndrome,” in which patients adapt their behavior to appease doctors so they can secure better healthcare. This manifests in numerous ways, such as never asking questions or downplaying the hardships they’re facing to avoid being labeled “difficult.”
This twisted approach to long-term healthcare is an understandable trauma response. Still, it leads to sicker patients when they avoid sharing important pieces of their medical puzzle to make their physician’s day easier.
Historically associated with terminally ill patients, the phenomenon sometimes crops up among chronically ill and disabled people.
“Good patient syndrome occurs when a patient consciously or unconsciously falls into a set of behaviors and a way of acting with a doctor that would exemplify a ‘good patient.’ In other words, a patient who listens and respects the doctor, isn’t too complicated, and defers to the doctor as the person of authority who knows best how to help their patients,” explains Toronto, Canada-based registered clinical and health psychologist Dr. Kaley Roosen.
“This may include being agreeable, friendly, soft spoken, deferential to doctor’s orders and suggestions, being grateful and thankful, and overall not causing too much of a fuss or issue,” she adds.
There is no official clinical description, but for me, good patient syndrome has manifested as:
Good patient syndrome shares some characteristics with the “fawn” trauma response. While many people are familiar with “fight,” “flight,” and “freeze” as common responses to perceived threats, “fawn” is a fourth possible response. Fawning involves using people-pleasing behaviors to defuse conflict and reestablish a sense of safety.
Following years of countless hospital appointments to investigate various illnesses, including ulcerative colitis, I started “fawning” to find safety in the countless pristine white rooms.
Because I grew up immersed in medical environments and was regularly dealing with doctors from age 7, I did not have any sense of agency. I just wanted someone to help me, so most of the time, I went along with everything they said.
When I did speak up, my quality of care diminished. In addition, multiple doctors dismissed me as a “difficult patient,” which is a hard stain to remove once it makes its way into your medical records.
Almost all these behaviors communicate, ‘Please don’t hurt me because I’m already struggling.’
—Andrew Kidd, senior psychological therapist
Some physicians even refused to refer me for further treatments or admonished me for needing a different treatment when side effects reared their head.
Repeated rebuttals cemented the belief that my body was not mine to control. I returned to silencing myself, nodding along to every twist and turn in my treatment, struggling to speak up about flare-ups or side effects of medication.
“There’s a pressure to say the right answer … because then I’ll get praised, then I’ll be accepted,” explains Andrew Kidd, a senior psychological therapist. “It’s an expectation that if I do good, then I’m a good person. If I do bad, then I’m not a good person.
“And that’s what can lead to pandering and appeasement. Almost all of these behaviors communicate, ‘Please don’t hurt me because I’m already struggling,’” he adds.
Constantly finding myself in rooms full of experts did not make it easier to voice my concerns. The illness thrived in my body, yet the power to heal it lay in the hands of my medical team. That distinct power imbalance made slipping into “good patient” mode feel like my only option. And that allowed too much room for dishonesty to fester.
In my early 20s, when flare-ups made me a regular in the hospital again, I agreed to treatments that I already knew had horrific side effects, such as taking steroids and methotrexate to manage another autoimmune condition. This brought on a barrage of migraines, nose bleeds, exhaustion, and dizziness. Doctors had tried this approach various times, but with few other options, I acquiesced.
I downplayed the impact of the medications for months until the side effects overwhelmed my overall health by triggering flares of my many conditions, including IBD.
“Trying to be a good patient involves a complex maze of how we have been taught to respond to professionals, along with embarrassment, denial, distortion, and dissociation,” explains intersectional psychotherapist and relationship coach Zayna Brookhouse. “You are creating a fear-based falsification of the narrative of how your illness actually affects you, and this, in turn, leads to a less than successful treatment plan and outcome.”
Doctors weren’t able to see the whole picture because my desire to be a good patient was obscuring it.
The most crucial step to mitigate the effects of good patient syndrome is to balance the power dynamic between yourself and the medical team. They may be the experts, but it’s your body they are dealing with, so reclaim that power.
One way to start is by thinking about what you need to get out of your medical appointment.
“What do I need from this meeting in order for me to feel it was a success?” Kidd suggests as a starting point. “What do I need to hear myself saying in order to feel more in control of my experience?”
Practice this outside of your medical appointments — with family, friends, managers, and colleagues, he suggests, “so that when you’re in that position of a power dynamic differential, it’s second nature.”
If this feels too daunting to attempt, work on coping mechanisms that can help your medical trauma.
Personally, I like to do body scans, which remind me that my body is mine to examine and question.
I try to fit one in my schedule before every medical appointment, repeating mantras like, “I am in control of my body,” “I alone can consent to be touched,” and “I know my body better than anyone.”
Another good coping tool is to recruit a friend or family member to be your advocate in medical appointments. Having a buddy there will help bolster your confidence until you’re ready to go it alone.
Kidd recommends harnessing your fear and using the adrenaline to motivate you through daunting appointments.
“Think, ‘I’m more scared of not advocating myself than of the appointment.’ Get the fear behind you, so it becomes a motivational tool,” he says. “A lot of resilience and strength gets built through facing that fear. Illness is formidable, but so are you!”
You might also consider therapy. A lifetime of medical trauma doesn’t disappear overnight because we learn how to say no, so invest in your well-being and find a form of therapy that alleviates the pressure and empowers you to take charge of your healthcare.
Under the influence of good patient syndrome, I felt like doctors were overlords whose wishes I could never question or oppose. Then, for a short spell, when I threw off good patient syndrome’s influence, I became resistant to everything they suggested. Obviously, neither of these approaches is ideal.
Shifting my focus to seeing them as part of a team and ceasing relationships with some of my doctors helped dispel good patient syndrome and improved my overall health. Yes, I still came up against resistance and dismissals sometimes, but I learned to always bring backup to my appointments and to request a new referral if a doctor made me too uncomfortable.
Dr. Hana Patel, a U.K.-based National Health Service general practitioner, says this is perfectly acceptable “if you feel that the doctor is rushed or not listening attentively.”
“We don’t always get on with everyone, and if you feel that you do not have a good relationship with your doctor, you [should] request another doctor.”
Although this occasionally meant extended wait times, it felt like a worthy exchange for taking back control of my healthcare.
You know your body better than anyone else. Work with your physicians to get the best care, and don’t allow your fear of being mistreated or misunderstood to feed “good patient syndrome.”
“Bravery is action in the presence of fear,” Kidd adds. “The fear is natural, but something that is more scary is not getting the support and help that you need because you live with this illness every day.”
Medically reviewed on June 11, 2024
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