Undiagnosed chronic illness: why won’t anyone believe I’m sick
Why won’t anyone believe I am living with an undiagnosed illness?
Looking back, three years into a crippling undiagnosed chronic illness, it all seems so obvious that I was the quintessential candidate for a tropical parasite and medical gaslighting.
It was the wet season in the South Pacific. I was eating greasy fish burgers and fries, hitchhiking barefoot, not a care in the world. I even swam and swallowed unknown water nestled between pronged cliffs and rocks.
It was a parasite’s jackpot. I was that western female traveler not equipped for the fight. I was an eager college student from the University of Vermont, interested in sustainability, environmental art, and globe-trotting experiences. So, it just made sense I would go searching for adventure on a remote Polynesian island.
What did I know about health and wellness? I mean, I was raised in a healthy household. My parents are a picture of Los Angeles health. They would say:
“eat in moderation and make sure it’s fruits, vegetables, and lean proteins. Never drink soda, and make sure to get a ton of exercise. Oh, and low carb diets are good for weight loss.”
Altogether, pretty straightforward advice. When I was younger, I thought my family and I were so healthy.
Thinking about it my health now, I realize health issues have always plagued me. My immune system was purely awful. As a child, I was always on antibiotics for everything, ranging from strep throat to yeast infections. I was always on some cocktail of something. Even for my acne, I took Accutane junior year of high school. I spent my entire childhood in the doctor’s office.
And mentally, I always had a slight anger problem, underpinned by my secret: anxiety and depression.
As a kid, I sugar-coated it by staying quiet or shutting myself in my room, playing Roller Coaster Tycoon, and binging on sugary Gatorade. And then, in high school, I discovered my new perfect antidote…marijuana. That was my cover, from hiding my unhappiness to concealing my eating disorder horror stories.
But, I was lucky to have good genes. Because with good genes, no one could see how debilitated my insides were on the outside. Not even my family.
The land of the long white cloud – New Zealand
Then, I got to college: a haven for destroying my liver and brain. By junior year, I was studying abroad in New Zealand. I instantly fell in love with the landscape, culture, and people. At the start of a semester break, a couple of friends and I decided to take a spontaneous trip to somewhere none of us had ever been.
We went on the Air New Zealand website and found a sweet deal to Rarotonga, the largest island in the Cook Islands. A few days later, I was eating greasy fish burgers and fries, hitchhiking barefoot, not a care in the world.
Around the middle of the trip, flu-like symptoms, including fever, chills, diarrhea, and vomiting, appeared. Luckily for everyone else, I was the only one who was ill. I thought to myself; sweat out the toxins, rehydrate with water and rest in bed. And guess what? After a few days in bed, the symptoms started to ease. How could I have known that this was the portent for years of living with an undiagnosed chronic illness?
So, to celebrate the end of our holiday and my semblance of recovery, we had pizzas and beer in Avarua’s old harbor. I was ravenous and had more than my share of pizza that evening. A few hours later, I felt bloated and nauseous: diarrhea returned with a vengeance.
I remembered what I had read on the Lonely Planet health page for the South Pacific. To be honest, I don’t think I remember much past the first sentence: “most travelers who come to the South Pacific won’t experience anything worse than an upset stomach or a hangover.” So, I self-diagnosed myself with both of those and moved on.
The start of my undiagnosed chronic illness and undiagnosed chronic pain
When I returned to New Zealand from Rarotonga, I was absolutely exhausted but on a natural high after such a wonderful fun-filled trip. The bloating and nausea I experienced after eating pizza continued for the next few months. It wasn’t before long that I drew a connection between wheat products and my symptoms. Perhaps my body was starting to become gluten intolerant or even borderline celiac.
By the time I left New Zealand four months later and returned to the United States, I couldn’t eat gluten, dairy, refined sugar, corn, and raw nuts and seeds without feeling some reaction. Whether it be bloating, acne, constipation, diarrhea, gas, insomnia, or chronic fatigue.
My whole body just started feeling…weird.
I ignored it, though, and pretended nothing was wrong. But, the stress in my life started to complicate everything. Being back at college in the United States for my senior year wasn’t easy. I was a typical stressed college student.
My friends had moved on while I was gone. I was living and subletting with nine guys, pretty much a frat of snowboarders and skaters who smoked copiously and drank like barbarians.
Symptoms of my undiagnosed chronic illness not only persisted but worsened
I was working three jobs, and my health started to deteriorate. Unexplainably, I lost about ten pounds; I looked borderline anorexic.
I had so many digestive issues that I was going on a juice cleanse every other week just to keep them at bay. I looked like four twigs for arms and legs and a beach ball for a stomach.
As my health deteriorated, so did my relationships. Coping with an undiagnosed chronic illness was becoming impossible. I had a toxic on-and-off relationship with my best friend Ryan, who I knew loved me.
One day, I suddenly noticed he was disappearing from my life. He was more and more interested in partying and meeting other girls than being by my side. As I lost control of my body, I lost control of us. Lost for words, I couldn’t fully explain my health issues to him because I didn’t know how.
He knew something was different about me. Perhaps he thought his feelings for me weren’t reciprocal, which was only partially true. I loved him, but differently from how he loved me. And now, when I need his support, he was gone. I was dumped because of a chronic illness.
Friends who abandon you in hard times became an all too common occurrence for me. Living with my all-male roommates became harder and harder for me. They secretly judged and ridiculed me behind my back for being on constant juice cleanses. I guess their contempt wasn’t a secret; they would let loose with a tirade of hurtful comments dressed up as comedy whenever they were drunk. My undiagnosed chronic illness was a reason for them to exclude me.
They had no idea why I had a balloon for a stomach, excessive mood swings, uncomfortable gas, and near-constant trips in and out of the bathroom. And, we definitely had an increase in bills for toilet paper. My only safe space was at my best friend Lydia’s apartment. I would snuggle into her clean couch, watch Parks and Recreation, eat organic salad, and drink fresh kombucha from Montreal.
Seeking answers for my undiagnosed chronic illness in Los Angeles
No matter what I tried, my health was not getting better. In frustration, I flew home to my parent’s place in Los Angeles from Vermont to get more testing done. A barrage of tests followed, and just as I feared, they found nothing. The male doctor, which I did not want to go to, said there was nothing wrong with me. My blood results were normal, the scans were clear, so there was nothing to do except live with my symptoms.When he told me this, my face got hot. My stomach was twisting with butterflies, my teeth were clenched, and my eyes filled with tears. I could not have been more frustrated because I knew there was something wrong with me, and it was his job to find out what that was.
Feelings of anger washed over me, but all I could do was cry. I walked out of the room, mumbling to no one in particular, “I am living with an undiagnosed chronic illness; undiagnosed chronic pain. Why won’t anyone believe me? Was I going to be a victim of medical gaslighting?"
Living with undiagnosed illness shouldn't mean living medical gaslighting
You see, I come from a conventional Jewish family who believes western medicine has all the answers. So, to them, I was regarded as an anxious basket-case: ‘the boy who cried wolf.’
When I was at home getting tested in Los Angeles, I had to deal with my mother. A woman with whom I have a complicated relationship. I tried talking to her about my body and how I felt. She brushed me away. She said my anxiety stemmed from my upcoming graduation from college and college burnout. And that my undiagnosed chronic illness wasn't real. If a doctor couldn't find anything wrong with me, then clearly, there was nothing wrong with me!
Apparently, I was overthinking my undiagnosed illness, and it was my mind causing all these symptoms. Who knew my mind was so powerful? I knew my mother loved me, but why did she find it so hard to believe me. I wondered if my undiagnosed illness and undiagnosed chronic pain somehow irritated her.
Within a few days, our relationship and conversations, per usual, grew hostile. It was easier for me to return to Vermont, where no one would have to deal with it. In any case, there was nothing anyone could do for me. It was apparently all in my head. I was beyond frustrated. No one close to me was listening to me. Everyone thought I was a hypochondriac; that I was making up my chronic illness
I returned to Vermont, desperate to find a cure for my undiagnosed chronic illness. I decided to pursue alternative medicine; after all, what could I lose. I used my waitress’s earnings to make an appointment with a herbalist at our local apothecary. I had been studying herbalism on and off for a year or so and wanted to see how it could help me.
Can herbs cure an undiagnosed chronic illness?
The herbalist patiently listened to me describe my symptoms. I explained to her that I had been living with an undiagnosed chronic illness for years and that my doctors hadn't found anything. She then asked me a few questions and then said I might have a small intestinal bacterial overgrowth (SIBO), a leaky gut, and candida overgrowth. That was a lot of information for me to process, primarily because my conventional doctors had never even mentioned these as possible causes.
She prescribed me some herbs, including licorice root, goldenseal, nervine tea blends, and a few other items. I honestly tried all of these. I also stuffed as much ‘natural’ food and supplements into my fragile body that it could handle. For the next year or so, I was on a stringent diet, staying away from all sugars, including fruit, gluten, dairy, nuts, seeds, beans, you name it. I mainly lived on a diet of eggs, vegetables, hummus, sun-dried tomatoes, and quinoa. I honestly can’t even remember what I allowed myself to eat that spring and summer of 2016.
The diet was miserable. I was ravenously hungry and craving anything saccharine all the time. But, I thought I was improving, maybe just a little. In the summer of 2016, I moved out of the male-dominated house into a small three-bedroom with two guy friends, which was much more manageable for me. I was now able to hide my illness-prone lifestyle more easily.
That summer, I also rekindled the flame with Ryan. I played up my chronic undiagnosed illness for sympathy points and had our toxic relationship in my grasp once again. His love for me burned like a recurring forest fire. He could not help me with my condition, but at least he was there to comfort me, and that was what I needed. I allowed the relationship that should have ended years ago to continue.
I lived with a slight inkling of hope that maybe I was getting better, that maybe my undiagnosed chronic illness would become a distant memory (which unfortunately was derailed every other week due to one or more of symptoms flaring up). All the colors in my kaleidoscopic paint box were grey. I was miserable, and my overactive nervous system and mental health were a whole other animal.
So my chronic undiagnosed illness wasn’t all in my head: it was in my blood
In hindsight, it seems only apparent now that a parasite was the cause of all of my undiagnosed chronic illnesses. Fast forward to the summer of 2017.
I was in one of the most prominent naturopathic offices of Dr. Christine Surrago, where she used cyber scan technology to diagnose me with a rare parasite only found in the Pacific tropics. This parasite was the cause of a host of my health issues, including diverticulitis and an ulcer between my colon and small intestine. With one adjustment of the scan, Dr. Christine Surrago healed it all. The only way I can describe her healing methods is pure magic.
Looking back, I know if I had been diagnosed with the parasite much earlier, I would have suffered much less. My relationships with my family, friends, and housemates would have been so much easier. All events between 2015 and 2017 would have been so much easier. But, the truth is, I wouldn’t change a thing. Because of my poor health, I could not travel to the Middle East, so instead, I applied for my first writing job with the House of Citrine. This job changed my life forever in ways I could never imagine.
Today I am a professional traveler and health writer. Because I traveled and reviewed music festivals for House of Citrine, I had the time to meet up and camp with a mutual friend of a friend from New Zealand who was living in Santa Cruz. He is now my partner and the love of my life. And because I met my partner, I have been inspired to deal with my chronic health issues and truly live the adventurous traveling lifestyle I want to live.
Because without my long journey to a cure, I wouldn’t be the very person I am today, sitting here in New Zealand writing this story, knowing more about health and wellness than I ever did before.
Molly Helfend is the head writer of the conscious living magazine House of Citrine. Molly travels the world researching plant-human interconnected relationships and the transformational alchemy of nature. Molly Helfend uses her creative expression to illustrate the beauty of earth in a personal way.