How Medical Gaslighting Nearly Took My Life

The story of Bella

Hi!! I’m Bella, a 16yo from CT, with a plethora of chronic illnesses. Growing up, I was always the kid out sick, but we never knew why. It wasn’t until a couple years ago that I was going to the doctors monthly, and the ball started rolling. After enduring years of suffering, I realized if I didn’t start to advocate for myself, I would never have answers, and the monster inside of me would remain unnamed. As I started speaking up for myself, I learned that not all doctors I would meet would believe, or adequately treat me. I would then go on to face years of medical gaslighting at the hands of the people who held my life in their hands. As I started bringing up differential diagnoses, I was surprised to have them dismissed by my doctors because “those conditions are too rare.” I would then go on to receive over ten chronic diagnoses, six of which are considered to be rare, and I continue to see new specialists to diagnose and rule out other conditions.
In July of 2022, I was diagnosed, not with my first chronic illness, but the one that’s taken the biggest toll on my body. Superior Mesenteric Artery Syndrome, (SMAS), is the partial or complete compression of the duodenum (small intestine), by the superior mesenteric artery (branch of the aorta). SMAS causes a variety of symptoms, including post-prandial pain, nausea, and vomiting, weight loss, early satiety, and abdominal distention. SMAS is believed to affect 0.013% of the population, and has a mortality rate of 1 in 3. Unfortunately, over 33% of patients diagnosed with SMAS are diagnosed via autopsy. I cannot put into words how grateful I am to have advocated for myself and request to be tested.
SMAS is apart of an umbrella category of diagnoses called “Abdominal Vascular Compression Syndromes.” Other compressions include MALS (Median Arcuate Ligament Syndrome), Nutcracker Syndrome, May-Thurner Syndrome, and Thoracic Outlet Syndrome. These compressions tend to come in pairs, if not more. My current specialist, like several other providers across the world, does not believe in compression syndromes, and therefore refuses to test for them. I will soon make the trip to the University of Maryland Medical Center, as they are one of the only medical centers in the country that treat more than one compression.
Since my diagnosis of SMAS, I’ve been admitted to Connecticut Children’s Medical Center (CCMC) three times for treatment of severe malnutrition and dehydration, and placement of an NJ (nasal jejunal) feeding tube, as I am unable to meet my caloric requirements by mouth.
Despite this diagnosis and having had symptoms my entire life, my gastroenterologist kept insisting that my SMAS was the result of eating disorder-related weight loss as opposed to having had the compression since birth, and that my main issue is somatic hypersensitivity. Something that a lot of chronic pain patients don’t know is that the majority of providers that refer to their pain and symptoms as functional, amplified, and hypersensitive, are really referring to a psychosomatic symptom disorder. I went on to see three licensed psychologists, all of whom said I do not have a psychosomatic disorder. While I am not a medical professional, I do know that over 40% of patients diagnosed with a somatic symptom disorder go on to be diagnosed with a true physiological condition. Too many people, especially teenage pain patients, have their symptoms brushed off as anxiety, eating disorders, or conversion disorders. And in too many of these cases, that misdiagnosis is incredibly harmful, and can even be fatal.
When I was admitted for the first time this past summer, I was planned to have my NJ tube placed on a Friday morning while sedated. The morning of the placement, I had been having uncontrollable abdominal pain, but assured myself that I would be receiving pain management during the procedure. Moments before the wheelchair arrived to bring me to the procedure room, my extremities began going numb and tingly. Before I knew it, it had spread to my face, and began causing indescribable pain. I tried to remain calm and take deep breaths, as many providers have told me all of the symptoms I had been experiencing were the result of anxiety and uncontrolled mental illness. As I got into the wheelchair, I knew something wasn’t right. While being wheeled to the elevator, I began to lose consciousness. Once we had arrived in the procedure room, I remained in and out of consciousness. My primary specialist was contacted, and told the receiving provider that I was simply anxious and would benefit from a dose of Versed (an anti-anxiety medication). The attending sedation provider was informed, and all of a sudden I was being rushed into a treatment room. While I cannot recall every moment beyond this point, I remember hearing several providers trying to figure out what was happening, and hearing the fading sound of the monitor. I was in and out of consciousness for over an hour, as my blood pressure slowly rose, and my heart rate dropped. Once I regained full consciousness, we realized I was paralyzed from the waist down. While terrifying, this resolved within hours. It was over two weeks later that I was discharged and left with the responsibility of providing myself with nutrition via my NJ tube.
Why is it that so many of us need to have medical crisis to receive proper treatment? Shouldn’t patients be treated before their body starts shutting down? I can unfortunately tell you that out of the twenty-six licensed providers I’ve seen within the last two years, eight of them, all attending physicians at my local pediatric hospital, have blatantly gaslit me.
I don’t share this information seeking pity; I share this because, unfortunately, I am not the only person who has experienced medical gaslighting. Medical gaslighting is a form of severe malpractice. Throughout my journey of navigating the medical system, I have learned several strategies to self-advocate and know when a provider is not providing the standard of care. As I’ve learned, the result of medical gaslighting can be extremely dangerous, so I’ve made a promise to myself that I will do everything in my power to help others prevent the situation so many people with chronic illnesses have been in.
Thus far, I’ve created a project called the Chronic Illness Conference, where people across the world can share their experiences living with chronic illness, and for others to learn about the things we deal with on a daily basis. It is my hope that by bringing awareness to chronic illness, others can educate themselves and help in reversing negative stereotypes towards the chronically ill.
Today, I am trying to live each minute of my life to the fullest, as I know how quickly things can take a turn for the worst. And even though at the beginning, I was embarrassed to show my feeding tube, I realized that it’s absolutely nothing to be ashamed about; it’s literally keeping me alive!!