How Health Care Practitioners Can Address Medical Gaslighting

“I reckon it’s only anxiety, you’re a highly anxious person.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I wish I could sit here while typing and state that this was only a one-time occurrence. That it was only the one physician who blanketed me with a statement like this, that I am just a young woman with anxiety and that would be it. I wish it was as simple as labeling me under a subjective bias after meeting me once without hearing my story repeatedly, different symptoms and different complaints.

But it wasn’t and even now, it isn’t.

Medical gaslighting is a term I have grown to adore using in the most distasteful of ways. It’s the act of taking someone’s concerns and fears, regardless of how complex or valid they truly are, and shoving them back down your throat with a simple sentence that makes you question every single experience you’ve had with your body. You wonder if maybe things truly are just a manifestation of your anxiety, maybe you are just being paranoid because you had a conversation with a friend who has a complex condition that you relate to, or maybe you’re just trying to find something wrong because your anxiety says there always is something wrong regardless of how you are feeling. You constantly question the one person you should always be able to trust or rely on: yourself.

The first experience with medical gaslighting I can actively remember is being a 19-year-old woman and waking up in the morning with horrific abdominal pain that crushed me each time I moved. I opened my eyes, noticed a nagging pain in the upper quadrants of my stomach, and chose to ignore it. By this point in my life, chronic pain was already a common occurrence, but I was unaware that I was actually an  Ehlers Danlos Syndrome patient at this time. By the end of the morning, I was in bed and inconsolable by my mother and boyfriend at the time.

I couldn’t decide what I wanted to do to cope with it. Medication didn’t help, changing positions didn’t help, heat packs made everything worse. I couldn’t decide if I was more comfortable lying down, standing up, or even sitting. Each position hurt more than the last and it made the anxiety affiliated with pain even worse. My mother started the gaslighting experience with, “Are you sure you need to go to the emergency room?” I questioned myself at that point, but the pain was so excruciating that I would have seen Jesus if it would have put a stop to it for me.

Emergency started with triage, and triage always seems to have a nurse that hears so many complaints in a day they almost don’t even seem like they’re listening anymore. They get so desensitized to the repeated exposure that a complaint like sudden onset abdominal pain becomes like a factory line. Assess, move to the waiting room, wait. Assess, vital signs, wait. I can’t blame them for being so, especially after working as an emergency nurse myself, but at this point it was terrifying.

I was moved into a cubicle and waited to be assessed by a medical officer. I laid on the trolley and did my best not to grimace or move as the nurse palpated my abdomen. I can’t even remember her name or really what her purpose was at the time. All I knew was that the pain wasn’t getting better and what she was doing wasn’t helping. The doctor who followed her didn’t do much either, just referred me for an ultrasound and kept asking me whether or not I was pregnant. The urine sample proved negative, but they were adamant I was lying.

My purpose in telling this story is that despite repeatedly explaining myself and my pain, I was never validated or made to feel that I was involved in the clinical decision-making. I ended up signing myself out against medical advice because after eight hours, I had not been offered any pain relief or any answers. I was told I was being anxious and it was likely related to that. After that visit, I had a few other hospital visits that led to the same conversation. It even started seeping into my GP appointments. There was always assumptions, but never any answers as to why I continually experienced a vast variety of symptoms with no answers.

I eventually became a Registered Nurse myself, desperate to ensure that patient advocacy became a priority in healthcare systems. At times, I can understand how it becomes so easy to want to label people and assume we know what’s best for our patients. Active listening seems to be rare, and the frustrating part is knowing that anecdotal evidence does not always present active answers for us as practitioners, further dismissing patients’ subjective complaints and experiences.

We want to help people, to make them feel better, solve the problems that arise with a simple pill or assessment. But it never truly is that simple. Ultimately, patient experiences become murky with the assumptions ladled onto them by health care providers wanting to create a diagnostic picture that suits the narrative they gain from objective data rather than subjective patient experience.

When did we become so obsessed with wanting to understand patients based on data rather than their physical and mental manifestations? Why do we choose to label people with a wishy-washy diagnosis rather than admit that we don’t actually know what’s wrong? The healthcare system barrages its patients with opportunities, but rarely actually presents them in a way that allows patients to openly express their concerns without feeling they don’t know their bodies. Patients need to advocate for themselves repeatedly and rarely see a change in the answers.

I began to truly understand the complex side of this system when I became a patient myself. Ehlers Danlos syndrome (EDS) is a complex connective tissue disorder that has graced me with fabulously soft and stretchy skin but also with chronic pain and hypermobile joints. I look like a typical 28-year-old female but internally, I continuously experience manifestations such as gastrointestinal problems, chronic pain, joint subluxations and orthostatic changes.

Most people with Ehlers Danlos Syndrome can tell you it is never easy to get a diagnosis for the multiple symptoms you experience, because practitioners often want to focus on the common ground rather than suspect any kind of rare genetic disorder. As a practitioner, I can understand not wanting to focus on the “zebras” of medicine initially, but if you have a patient who repeatedly presents with interconnected health complaints, it would make sense to seek advice from a specialist or try to connect the dots to less common conditions.

You spend years continuously being told your pain isn’t truly pain, your chest pains and abdominal pains are anxiety and stress-related, the dizziness and blurry vision is due to fatigue and lack of sleep. “Let me give you something to help you rest.” “But you said that your symptoms improved.” “You haven’t been compliant with your medications.” Everything is always something you have or haven’t done rather than how the system has failed you.

Patient advocacy is a huge component of medicine, but we often find ourselves having to advocate independently for the needs we require. When do we stop blaming patients for the shortcomings in our healthcare systems and the education of practitioners? When do we start allowing patients to play an active role in their care and decision-making, and share our clinical judgments in a way that involves them and what they are experiencing? When do we start allowing patients to feel comfortable and safe again to openly share that they disagree with our opinions?

When do we start allowing our patients to feel validated for their experiences without making them feel it’s a psychological complaint?