Doc. Attacked, I Pushed Back: My Experience with Medical Gaslighting
Along my journey, I sought an OB/GYN specialist’s guidance to understand the link between female hormones and IBS among other complications. I waited six months for a visit with the “best OB/GYN” in our county, having consulted with two others in the past who weren’t of much help.
Due to COVID rules, my mother was not allowed into the appointment with me. This policy wasn’t communicated ahead of time. I was still a minor. Anyways, after much commotion with the front desk, I went into the appointment alone expecting–at the very least– to feel trusted, embraced, and guided with compassion.
The specialist herself wasn’t the first one to begin the questioning: it was her assistant. I was assertive in communicating that I came to see the doctor specifically. “She’ll be in shortly,” she affirmed, “following a preliminary set of questions.”
Rounds of interrogation ensued. The medical assistant began by asking me to share my story with her. I’d then wait for her to discuss with the doctor outside of the room, and proceed to answer additional questions from the doctor herself.
The two-hour process was nauseating, especially since my responses seemed to be ignored, being asked similar questions by both the OB/GYN and her assistant. I told them both, over and over again, “I’ve had a GI condition for three years now, and am still dealing with it–stomach pain, belching, nausea, vomiting, etc. I am working with GI doctors as well but I’m here hoping that maybe you can help me figure this out too. ”
The two-pronged interview seemed to slim my situation down to a single conclusion: “I am going to refer you to the eating disorder department. You’ve seen a therapist before right?” After a two minute physical exam she gathered, “you’re just nervous, tense, and anxious.” I was fuming. Of course I’d be anxious if a stranger who just targeted me and dismissed my pain was touching me!
This wasn’t the first time someone had made this assumption because of my lower body weight coupled with my history of stress and anxiety. So that’s exactly what I told her: “I can see why you would think that, but you have to understand– I eat healthy, I am an athlete, and I know I need to nourish my body to train and thrive. I’m really trying, but I have a problem digesting what I am consuming, which may have caused a disordered eating pattern. Besides, my therapy was for something else I was going through five years ago, and has nothing to do with any of this.”
To my surprise, she only pushed further, and further, and further with a condescending tone and a scornful demeanor that I could sense hidden behind her mask. The frustration inside of me could no longer be withheld, nor could I allow this gaslighting to continue. I lashed back: “With all due respect, doctor, you’re not working with me here. I am telling you my story, and you’re accusing me of something I am not. I need physical help, I have a GI condition, and again, I am an athlete. If my mom was here, she would also tell you that I eat A LOT, probably more than you and your whole department combined! IBS is on my medical file, so please, believe me! I am being totally honest with you because I need your help.”
Even if the patient did have an eating disorder–a psychological problem involving weight and self-esteem issues– an approach so offensive and hostile would set them off further. It was only until I mentioned that I was to undergo an endoscopy in our second appointment did this specialist stop the accusations and begin to empathize with my condition. She never brought up the “eating disorder department” again; in visits to follow, she actually acknowledged my condition by asking how I was feeling.
Although the doctor ordered a few tests that could provide potential answers, I left that first consultation exasperated and on a sour note of distrust. Maybe I overreacted, but I deem it a defense for self-advocacy; it was a necessary overreaction to gain her respect. It baffles me that I now appreciate when a doctor takes my word seriously and tries to work with me rather than against me. It baffles me that I feel the need to prove my pain in order to be believed. Why would a young, teenage girl ever WANT to be in a state of such agony? And why would someone like me–an athlete trying to train and compete– lie about something like that? I’m going off to college soon, all I want is to feel well and be healthy! That’s why I’ve waited six months to see the best of the best!
We go to experts seeking care because they are supposed to have the knowledge to guide different patients based on the symptoms they report and the stories they share. The problem is rooted in that they often lack the know-how to get there, communication and bedside-manner falling short (I later discovered, through reading online reviews, that this doctor had reports of poor bedside-manner on file–not surprised).
There is no doubt that this OBGYN was a good doctor with accredited expertise. I actually gained much respect for her after she began to empathize and work with me. Oftentimes, when a case is complex and the pieces are scattered, standard protocol doesn’t account for the fragments on the outskirts. This protocol is often formulated to puzzle a conventional case with a conventional fix, usually involving pharmaceuticals–the easiest way to heal the patient. But humans cannot continue being treated this way. Every person is different, and our unique stories require that individual needs be catered to.
In late December, this same OBGYN prescribed me a set of pills that would assist in hormonal balance. I don’t think she considered the side-effects of them on someone like me who was taking other GI medications at the time, clearly visible to her on my chart. Of course I asked about them, but didn’t do enough research before submitting myself to this treatment plan. What a mistake it was to plunge right in.
The next three months were absolute torture: my appetite wouldn’t shut down, I gained excessive weight, felt weighed down constantly, my skin broke out, and the worst yet– my stomach condition exacerbated. My performance on the tennis court began to fail: I was unable to bounce around with my energizer bunny spirit, and was often forced to retire in the middle of training sessions or matches. A physical and emotional heaviness I had never felt before, my bubbly spark faded, I isolated myself, and cried myself to sleep every night curled up with a heating pad. Will this nightmare ever end? And oh– how can I forget?!? The treatment barely worked!
In early March, I sent a note to the OBGYN reporting my symptoms following the first round of medication, inquiring specifically about side-effects. A week later, I found a message in my inbox from the doctor’s assistant: “I would refer back to your gastroenterologist to see if your symptoms are not associated with an IBS exacerbation first.” I don’t even think I have to explain how wrong, and on how many levels wrong this response is!
Absolutely livid, I knew that if this “care team” wasn’t going to help me, I should reconsider my standing under their care. Despite all the calls and messages I had been sending, I haven’t heard back from the doctor herself since our second appointment that took place in February.
One Saturday, I was invited to a friend’s birthday lunch. I met a woman who shared a similar experience to me, and told her what I had been prescribed. Her eyes widened as her jaw dropped, “those mess you up! Your mood, your movement, digestion, everything! I was on that and gained fifteen pounds in two weeks, I felt awful all the time! The treatment worked a couple of times, but looking back, it wasn’t worth it for me at all!” At that point, I could confidently concur in my mind that it wasn’t worth it for me either.
Within a month after cutting those pills out, I finally felt like myself again. Although my IBS still struck strong, if symptoms were manageable, I could focus on living my life again. Research reports that a healthy gut microbiome is the key to overall wellness (healthline.com), so getting my IBS in check is the first step to healing the mess that emerged from it.
My direction steered toward finding help outside of our standard system, with the guidance of a family friend who referred me to a one-on-one registered dietitian. Additionally, the woman who administered my colonics recommended a set of natural herbs that have been vital to my relief. She also taught me how to self administer an enema, which they sell for under five dollars at any pharmacy.
To those who ignore, dismiss, and attack me, I will continue to advocate for myself by putting them in their place. Just because they may hold the title and knowledge that make them an expert, it gives them no right to gaslight or disrespect anyone. Although underestimated, positive connections and meaningful moments are major tenants of healing. I am grateful to work with those willing to work with me, and I’m thankful for those committed to helping me heal. The support from my connections, their positive reinforcement, and their wealth of resources have elevated me from the emotional sickening spiral. While there are times at which I’m couch-ridden, my mind doesn’t plummet the same way that it used to. There is a solution, there is always hope, it shall pass. Tomorrow is another day.
Compared to the past many many months, my condition has improved tremendously thanks to the people in my life who validate my pain, understand my perspective, and help me seek out solutions. For the most part, I can go about my day and achieve my daily goals–what a privilege it has become to experience a couple days, or even just a single day, without pain. What a privilege it is on those days–to feel healthy, to feel normal! I am just waiting for the day when symptoms don’t cross my mind. I await consecutive days where people ask me, “how are you?” and I can reply with an authentic “I’m doing well!” as a smile beams across my face. But my journey is far from over, and there is still healing to be done. True healing requires patience, persistence, and perseverance over a period of time. Time–the remedy to most wounds. In order for this restorative time period to elapse, one must stand their ground, fighting both the internal and external battles that arise.