Last but not least, our final honor patient of the month, Jenna.
“The patient is so pleasant in the exam room that the root cause of symptoms must be psychological in nature.”
This is a direct quote from a cardiologist at Mayo Clinic who examined me for just forty-five seconds. It was like Speedy Gonzales meets Judge Judy. From this doctor’s perspective, smiling and being polite aren’t consistent with any form of physical illness.
I wish I could say this was an isolated incident, but it’s actually representative of the majority. I was born with a genetic condition called Ehlers-Danlos syndrome, hypermobility type (hEDS). It impacts all organs and body systems that involve connective tissue: cardiovascular, gastrointestinal & autonomic nervous system, to name a few. As a result, EDS has a domino effect, bringing a variety of secondary conditions to my table–gastroparesis, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), among others. I was formally diagnosed with each physical condition, all backed up by positive test results. I have always been sick, but the debilitating symptoms didn’t manifest until my early twenties. Many doctors looked right past the paperwork and made up their own conclusions based on the width of my smile.
In nursing school, I learned about the doctor-patient connection from the inside out. The doctor presents their solution to a health problem, and the patient obeys. When I first fell sick, I took my doctors’ advice to heart because I believed in them. I quickly learned that they did not believe in me. Despite hundreds of positive diagnostic test results, I was falsely labeled as the girl with only anxiety, depression, or a restrictive eating disorder. After all, how can a previously healthy young woman fall ill out of thin air? It just had to be in my head, right?
It didn’t take long for other doctors to follow in my cardiologist’s footsteps. One gastroenterologist tried to convince my mom to place me in a group home for young women with anorexia nervosa. My primary physician cycled me through six antidepressants before admitting depression wasn’t the root cause. Every time I’d start at square one with a new doctor, I almost expected them to blame it on the brain. The naysayers outnumber the believers, tenfold.
The few doctors who believed me still didn’t get it right. I became a personal project for them, some even admitting that my recovery would “put them on the map.” If they could help me get better, they could help anyone. A former, overly-confident endocrinologist misdiagnosed me with Hashimoto’s disease. He prescribed medication before drawing any labs, which destroyed my normal thyroid hormone levels. When I tried to confront him about it, he hurried me out of the office. Similar encounters with other physicians have complicated my health even further. Some medications have triggered anaphylactic reactions, others caused unbearable pain & nausea. Pills became either my best friend or worst enemy.
Eventually, I realized I’m on my own. You can’t blindly throw medication at a complicated illness and expect positive results. If I wanted to get better, I knew I’d have to put in the work myself. You can lead a horse to water, but you can’t force the pills down his throat.
The first half of 2018 I focused on taking back control of my life. I weaned myself off all unnecessary medication, cleaned up my diet, learned to walk again, started conditioning my body through exercise and focused on my mental health (socializing, seeing a therapist weekly, enforcing personal boundaries, etc). For a while, it worked! I earned back a few of my abilities, like driving short distances & eating creamier soups. For a few short months, I felt like my old self again.
Unfortunately, nothing lasts forever.
I was diagnosed with superior mesenteric artery syndrome (SMAS) in June of 2018. The extreme weight loss from gastroparesis caused a physical deformity that further inhibited my ability to eat. Within a matter of weeks I went from running on the treadmill to fighting for my life in the ICU. These drastic variations in health are the epitome of chronic illness, and that’s the hardest pill to swallow. I can’t expect anyone around me to recognize my abilities when I’m not even sure what they are moment to moment. After I lost most of my newfound independence, the judgment poured in like a monsoon. I tried my best to spread awareness while still maintaining whatever abilities I had left. I didn’t do it alone.
I have fallen time and time again, but I’ve never hit the ground. My husband, my mother, my brother, my in-laws, my friends–they’ve kept me sane. Michael, my husband of nearly five years, has accepted and celebrated me in every form. He makes me feel beautiful and strong, even when I’m being fed through a tube in my stomach. My mother has slept in too many uncomfortable ER chairs, and still wakes up with a smile on her face ready to fight another day. My brother should receive a therapist’s compensation for all the hours he’s spent working through my issues, from paper cuts to major surgery. My in-laws and (true) friends have never once questioned my motives. They even go out of their way to make sure I have something edible at their dinner tables. They care about me, and they’ve proven it every single day.
If being sick has taught me anything, it has broadened my view of the world. “Not everything is as it seems” is my motto in life. The angry man behind the cash register, the quiet woman who won’t look you in the eye as she walks by, the old couple silently holding hands in the waiting room next to you–they’re all fighting battles you know nothing about. I have learned to treat everyone the same, regardless of how they treat me. Be kind, be patient and be humble. You won’t regret it.