‘THIS is my wake up call. I took charge of my health once and for all. NO MORE dismissive doctors being the drivers of my journey.’: Chronic illness warrior advocates for herself, ‘I can only control my attitude’

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“Throughout my life, I had always struggled with health problems but never thought those ‘pesky symptoms’ that came and went would become a chronic illness. Growing up, I had dealt with a lot of breathing problems. According to my mom, I started presenting breathing troubles in infancy. I would have a chronic cough, wheezing, sleep apnea, sleepwalking, and more… not BAD, but still bad enough where we should have noticed something was more wrong. My PCP would say, ‘Nothing to worry about.’ However, this was not the case.

Those symptoms escalated, became more frequent, and brought up new symptoms. I would go to sleepovers and friends would say, ‘Who’s breathing heavily?’ I would have trouble swallowing and would ride in a car at night overcome with anxiety because of how dizzy and sick I felt. I always went out and did normal activities, despite how sick I felt. As an outsider looking in, you would never be able to tell what I was hiding behind my smile.

I noticed my symptoms getting worse in seventh grade, during track. I was in the middle of the 400-meter dash, catching up to the girl in first place, and I could feel myself slipping away. I stopped running, my vision went black, and I lost my breath for a moment. I could see the chance of victory slipping away. Little did I know, this was the moment my symptoms became chronic, and it would only get worse from there. These symptoms haunted me for years, and still do. I could see myself getting worse over time, but could not do anything about it. The fatigue, brain fog, dizziness, swallowing, and breathing problems only continued to worsen. I would try talking to my parents about it, but they just assumed it was possibly asthma. Little did we know, it was WAY more than this.

The summer going into my sophomore year of high school, I was diagnosed with asthma by my PCP and prescribed an inhaler. It never reduced symptoms, they just continued progressing from there. By my sophomore year, my symptoms had escalated further, and not only that, but I was also dealing with multiple complex traumas in the school setting. I was finally referred to see an allergist, who finally confirmed the asthma diagnosis, did an environmental allergy test, and diagnosed me with a condition called ‘vocal cord dysfunction.’ I was then referred to seek treatment with a speech therapist. To me and my family, it sounded like a fairy tale ending, knowing something in addition to asthma was causing my debilitating symptoms. Looking back now, my health journey was just getting started!

At the appointment, the allergist was PUZZLED at the fact I had only reacted to very few of the environmental allergens they tested for (which is exceedingly rare for people with asthma). THIS should have been my wake up call. My symptoms were not just ‘asthma,’ it was something way more. ‘I guess you’ll just be a zebra,’ my doctor would say. Throughout sophomore and junior year of high school, I was constantly going to my allergist, practically every other month, to switch up oral medications to relieve my symptoms, but it never was successful. The techniques I learned in speech therapy for my diagnosed VCD never subsided my symptoms either. I once again felt stuck at a standstill with my health. Just when I thought I had it all figured it, I did not, and I still do not even know.

I took charge of my health once and for all: NO MORE parents, friends, or dismissive doctors being the drivers of my health journey. I spent countless nights researching the possible conditions I could have with a quick Google search, but when I brought them up to my doctors, I was dismissed time and time again. One of the worst things about being dismissed by doctors is the fact I felt like I was GOING CRAZY because NO ONE believed me! It is a scary thing when you can psychically see and feel yourself getting sicker, yet are not able to do anything about it. So, I did not. I (mostly) ignored my symptoms, lived a normal life despite getting sicker, and pretended they’d go away tomorrow. In reality, I felt trapped inside my own body, SCARED of what each day would bring, and if I would even survive each night (because of how bad the breathing issues got).

I think what made my symptoms escalate a lot quicker and become more severe was partly due to the traumas I faced my sophomore year. In the school setting, I overcame countless sexual harassments, verbal abuse, bullying, and more, in addition to dealing with the everyday stressors of life and feeling like the backseat driver to my health as it worsened. I was beginning to lose ME—the girl who always had a smile on her face, was not afraid to be goofy, crazy athletic, and kind. I no longer lived a carefree life. Instead, I lived in fear of my life. EVERY decision made from then on was always determined by my chronic illness. As much as I want to say I did not become dragged down by my diagnosed and undiagnosed symptoms, I was.

Flash forward to my junior year of high school, my health got A LOT worse. I continued having all my typical symptoms, and started noticing food sensitivities, feeling sick after eating, and started noticing physical signs of my sickness worsening, such as under-eye bags and circles darkening, premature aging, hair thinning becoming more prominent, and malnutrition. As I sat in history class one day, I said to myself, ‘This doesn’t feel right.’ I could sense a breathing episode coming on, but felt it become worse than previous attacks. Still assuming it was asthma and VCD, I went to my locker in a tizzy to go use my inhaler and do my breathing techniques I learned at speech therapy. Another time, I remember sitting in the lunchroom feeling like the world was a movie, and I was just watching it because of how debilitating my symptoms had become.

This year, everything has escalated. My symptoms have debilitated me to the point I do not leave my house unless I am going to the ER or going to a doctor’s appointment. Back in September of 2020 is when the big shift in my health further declined. I choked on food more often, my pulmonary symptoms became more apparent, in addition to neurological symptoms worsening. It seemed my body was allergic to itself and could never catch a break. I would have several moments where it felt like my airway was obstructed and my throat was closing, but I never knew what to do because doctors would always say, ‘It’s just asthma and VCD, or maybe even anxiety.’ Time and time again, I took everything doctors said too much to heart when I should have been a better advocate for myself, but it is a hard thing to do when you’re constantly dismissed as your symptoms continue worsening.

October 2020: ‘You’re going to be okay, you’re having an allergic reaction!’ my mom said as I was raced to the nearest ER. This was my first major anaphylactic attack that needed medical attention. This was ONLY the start of the many ER trips to follow! I went to different PCPs who continued to invalidate or misdiagnosed me with Eustachian tube dysfunction and hyperventilation syndrome until I saw my ENT. ‘Your esophagus appears to be very inflamed,’ was the BEST news I had heard in a while!

Hearing my ENT discover what could be causing some of my troubling symptoms was such a relief, but not only this, I WASN’T GOING CRAZY! Chronic illness can be such a scary thing because I silently was dealing with symptoms worsening over the years as doctors would say, ‘It’s all in your head.’ Hearing my ENT had found a physiological disturbance during my scope validated how I was feeling immensely. He then referred me to a GI where more in-depth testing would be necessary.

Throughout November and December, I went to the ER ten times in total. Every time, I felt sicker and sicker, became weaker, and started losing hope again. I can barely do online school without getting EXTREME fatigue, chest pain, shortness of breath, a fever, and have spent most days in bed. I had to use my EpiPen on two of those ER visits but stopped after the second time I used it because the doctors speculated I could have heart problems, on top of malnutrition, as my heart rate went up to 300 bpm after epinephrine administration. That was one of my scariest experiences to date in an ER. I had been to the ER for severe reactions, stroke warning symptoms, palpitations, and other debilitating symptoms before, but the scariest thing about this experience was feeling I no longer had control of my body, just my attitude.

I did my best to stay positive, despite the fact I was uncontrollably shaking and could feel my heart throbbing, as my heart rate continued to climb. I could do nothing about it, except watch medical personnel hold me down as I continued to shake. ‘Please don’t die, hang on,’ I said to myself repeatedly. I continued going to specialists, DETERMINED to get answers, only to be dismissed time and time again. ‘You’re too young to be sick.’ ‘Your labs are normal.’ ‘I think you just have anxiety.’ ALL things doctors have said to me as the diagnosed and undiagnosed symptoms increasingly worsened. My pulmonologist said, ‘Just take Xanax. The chronic symptoms you’ve had for 6 years will all go away in a few days.’ ERs have sent me home COUNTLESS times when I should have been admitted, based on how severe and abnormal my symptoms were.

In one instance, staff sent me home as I was green in the face, telling me, ‘Would you like to speak with one of our intakes? I think you just need some sleep and are dealing with anxiety.’ This is the reality of the healthcare system. It is not all unicorns and rainbows, doctors get it wrong a lot more than they care to admit, and need to do a better job at listening to the patient and their symptoms, instead of solely going off on lab results. I have had doctors refuse to see me because I am just on the verge of adult doctors and aging out of pediatrics. THIS should not happen to anyone. It should not have taken years to be heard, but now I am because of how debilitating the symptoms have become, which is sad.

I started feeling hopeful again when I saw my cardiologist and GI for the first time! My GI scheduled an endoscopy for early February, to look for EoE and GERD and my cardio doctor has taken an aggressive approach to help me get answers! ‘I am ordering a Holter monitor, an echocardiogram, and tilt table test,’ he said. Although getting these tests was scary, because of the fear of the unknown, they also are full of beneficial data in the long run. At the tilt test, someone said, ‘Did you pass out?’ I could feel myself slipping away in an unconscious state. I could hear his voice and felt my body move back and forth, unable to reply or control my movements. And in an instant, everything stopped, time froze.

I woke up on the tilt table very confused, vision blurred, headache, and very dizzy. ‘You just passed out, which confirms a positive tilt table test,’ said the guy administering the test. ‘The way you fainted was VERY abnormal, your body moved forward and backward six times as you were unconscious!’ I was in disbelief at what he had said and tried to regain full consciousness. Although this test was hard on my body, it also relieved me in the sense the test was then over, and when the cardiologist reviews the data later, I will hopefully get answers!

This brings me to today. Do I have my full diagnosis, symptoms controlled, and answers to everything? No, but I am optimistic I will get there! I have countless specialty appointments lined up. With this said, advocating for my health is scary still to this day, but I am getting better at doing it each day. I am constantly doing my own research, asking doctors the questions I want to be answered, and am staying positive for the time being. I am no longer afraid of hiring a doctor and firing them if need be like I once was. The one thing about chronic illness no one tells you about is how isolating it is. With chronic illness, you are scared of how much time you have lost and will continue to lose.

Every decision in my life has been taken into consideration with my chronic illnesses and undiagnosed symptoms. I have canceled plans, lost friends, missed out on important life events, all to chronic illness. Of anything you can take away from my story, know there’s a lot more to a person behind every smile and every laugh. I was ALWAYS known as the smiley girl, but little did the outside world know I downplayed my symptoms and was fighting (and still am fighting) a battle not yet won, but one which will be OVERCOME! I cannot control my circumstances, but I can control how I handle them!”

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