“Sedated and wearing diapers, I flew almost 3,000 miles from home, during a global pandemic, to have a life-saving surgery that would fuse my skull to my cervical spine. My husband, John, and I arrived in Washington D.C. as COVID cases soared, and the White House locked down as civil rights protesters clashed with the United States Secret Service members just steps from the front lawn.
The world was falling apart as a top neurosurgeon prepared to piece me back together with six screws, two rods, cadaver bone, a giant heap of bone matrix, and 18 staples.
I watched the protests from a small TV in our hotel room and reflected on how I fought for 23 years to be heard by men and women in white coats who minimized my disabling symptoms and refused to acknowledge my struggle was real. More than once, well-intentioned doctors performed unnecessary surgeries that further complicated my health.
Last year, after discovering my first few gray hairs, I finally received a diagnosis for an illness that tormented me since adolescent acne. Then I received two more diagnoses and the news I would need surgery to address instability and excess movement between my skull and the top two vertebrae. I have Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS).
Even though my neurosurgeon told me, ‘You are at great risk for a significant stroke or cardiac event,’ I was one of many medically fragile patients whose health spiraled out of control when the pandemic halted medical care for elective procedures. I was having up to eleven paralysis episodes a week, caused by brainstem damage, and I could not swallow food for two months. But this wasn’t the first time the medical system overlooked me and my complex, multi-factorial illness.
THE BEGINNING OF MY HEALTH JOURNEY
As a teenager, I began to tremor while lifting weights. So much so, students nicknamed me ‘Shakes’ in high school. I would often pass out on my walk home from the gym, and remember the feel of frozen blacktop on my face as my body hit the ground, and the doubt that filled my stomach as my friendly pediatrician assured me, ‘This kind of thing happens to young girls. Don’t worry; you’ll grow out of it.’
I won a golf scholarship to a Division I school, but I developed exercise intolerance, and my athletic ability declined as my list of symptoms grew longer. I tore my right hip flexor, and my right shoulder shifted out of place. Cold weather triggered excruciating sharp pain at my skull base, and I developed a forward head posture and a hump on my neck. I could not tolerate medications, often felt foggy-headed, and had bone-crushing fatigue. The smell of perfume, cleaning products, and cinnamon-scented pinecones at the front of the craft store during the holiday season triggered migraine headaches and made my skin burn.
Somehow, I graduated from college with honors in only three years, married my longtime boyfriend, and moved from Portland to Philadelphia. Shortly after moving, migraine headaches and bouts of bed-spinning vertigo debilitated me. I could not sleep because of restless legs and widespread body pain, and I got serotonin syndrome from the first anxiety medication I had taken. To this day, when I hear Enya on the radio, I associate her beautiful voice with this horrible time in my life.
During the next two years, we moved to Chicago and San Francisco for my husband’s career. With every new city came new doctors with more diagnoses: depression, fibromyalgia, chronic fatigue syndrome, mitral valve prolapse syndrome, pituitary prolactinoma, seasonal allergies, asthma, trigeminal neuralgia, and migraine-associated vertigo. I tried eight different migraine medications for six weeks each, and none of them dampened my agony.
An endocrinologist surgically de-bulked the pituitary tumor, and some of my symptoms improved for a while. ‘Finally,’ I thought, ‘We found the smoking gun.’
I ended my marriage and moved to Portland. I had married someone I felt I owed my heart to because he stood by me when I was ill. I could do it because I felt broken. But you deserve to live in a world where the media and your friends and family do not imply you are unworthy of love because you are sick or disabled. I remarried in 2016 to my husband, John, after I had done a lot of self-work. Know that you are whole and worthy of love and belonging, even if you are sick or healing. Falling in love, being in love, marrying someone you love are not gifts reserved for those with good health. You are so much more than your symptoms!
In Portland I began a new job at the second-largest, private, public relations agency in the world. I penned letters on behalf of high-profile clients like Bill Gates and Steve Ballmer, facilitated media requests from top-tier publications, and helped launch life-changing products.
But my life was much the same.
I was running on fumes and collapsed into bed at night after taking Benadryl and Excedrin. I used all 30 days of paid time off to rest and recover at home when work was too much for my body.
My new endocrinologist thought the remainder of my pituitary tumor could be triggering my body to produce too much cortisol, as my weight skyrocketed almost 80 pounds. For months, I drew dozens of blood samples from a PICC line in my arm, collected my urine in an orange plastic jug for 24 hours, and bottled samples of my saliva at midnight. A surgeon inserted a catheter in a leg artery, and popped it under my skull and into my pituitary so he could draw a blood sample. I still remember the sound of flushed saline gurgling at the base of my brain.
I again improved some with surgery, but my doctor dismissed my remaining symptoms.
WHY DOES NOBODY BELIEVE ME?
One year later, my endocrinologist admitted me to the hospital for suspected adrenal insufficiency. High heart rate and low blood pressure triggered a code blue while resting in a hospital bed. A rapid response team rushed me to the Intensive Care Unit and filled my lungs with air. After three days in the ICU, ten days in the hospital, and thousands of dollars in testing, a circle of doctors delivered a diagnosis: mental illness.
Part of me couldn’t blame them. My symptoms changed rapidly and ping-ponged across multiple body systems. One day, I would complain of not being able to swallow. The next day, I doubled over with stomach pain and had what looked like seizures, but they did not show up on a test. The endocrinologist I had grown to trust over the past three years, came into my room and said, ‘You are making it hard for me here, and I am embarrassed. I want you to leave.’
‘I want to be evaluated by a psychiatrist,’ I demanded. I had seen a neurologist, gastroenterologist, cardiologist, rheumatologist, pulmonologist, endocrinologist, and a hospitalist, but not a psychiatrist. How could they arrive at that diagnosis? Because my presentation stumped them. A psychiatrist was the only qualified medical professional to determine whether or not my symptoms were psychological.
After listening to me talk openly for an hour at my bedside, the psychiatrist said, ‘You are well-adjusted for everything you have experienced. You may have some secondary anxiety—and I would worry about you if you did not—but I do not think all your physical symptoms are a result of mental illness.’
I thought the doctors would keep looking, but they sent me home. That hospital file followed me like a scarlet letter for years. Last year, a neurologist asked me to walk from the edge of my hospital room bed to the far wall and back. My gait was different. I walked like I was wearing a bulky diaper, and I collapsed as I made my way back to bed.
‘There is no physical reason you would collapse that fast,’ said the doctor. ‘You faked your leg weakness when I evaluated you in the emergency department, too.’
You could hear the desperation in my voice as tears filled my eyes, and I said, ‘I am not faking this. Why would I fake this?’
He waved my file in the air and said, ‘You have a very long history of problems nobody has been able to solve.’
The following week, on a sunny afternoon in my living room, I searched the internet for answers about what could be making me so sick. I read an article from The Ehlers Danlos Society: ‘One Gene Mutation Links Three Mysterious Debilitating Diseases.’ Sometimes in life, you know something to be right in your gut before an expert validates that truth. I knew this weird trifecta with no known cure was what was wrong with me. Grief rolled over me like a freight train as I curled up into a ball and waited for my husband, John, to come home. It would take five more months for an expert to tell me I was correct. But what’s five months when you’ve waited 23 years?
YOU DESERVE THESE THREE THINGS
I had surgery four months ago and continue to feel like my health journey is a small model of what’s going on globally—and I don’t just mean staying home when you want to be out with friends. Now more than ever, marginalized people are making our voices heard to create a more empathetic world. My experience with the medical system scarred my self-worth, and as I heal from the damage, I am also confronting my place in this world and sharing my story to help create more awareness around these three rare diseases. Increased awareness among doctors and patients means a quicker diagnosis, more funding, and better patient outcomes. Most of all, it means less human suffering and fewer lives lost.
Now is the time for a reckoning! Know this:
1. You deserve to live in a world where a doctor cannot say you are psychologically ill only because they don’t know what’s causing numerous, mysterious, and problematic physical symptoms. A mental health expert may diagnose you with an anxiety disorder, and you could also have a co-occurring physical illness. Don’t be ashamed of either! Anxiety may make your symptoms worse and recovery more difficult. Still, it is not a hall pass for doctors to deny your experience, to stop looking for physical illness, or to stop treating, listening, and advocating for you.
2. You deserve to live in a world where a quick smile, a clean appearance, and intelligence do not contradict your suffering. You know the game well, don’t you? Don’t wash or comb your hair or put on makeup, or you won’t look ‘sick enough.’ Don’t use too much medical terminology, or your doctor might resent you or think you’re a hypochondriac who uses Google to self-diagnose. And don’t you dare cry, because then the doctor will ask, ‘Are you always so emotional?’ Thinking about what you look like, what you say, how you say it, and whether you have a supportive partner or a mobility aid by your side are factors you should not have to consider when seeking supportive care.
3. You deserve to live in a world where what you accomplish on your best day is not a yardstick for how much you need to perform on a bad health day. Your disease may make you feel tired and weak, but you are not weak for needing rest. Rest and pacing yourself are essential acts of self-care that have nothing to do with self-worth. Resilience begins with rest.
ONE BIG QUESTION TO ASK YOURSELF
There is no guidebook or instruction manual for healing when you have a rare illness, or three. It can be terrifying and frustrating to discover a diagnosis doesn’t always mean more support, understanding, compassion, or even more treatment options. Asking myself this question has most helped to propel me along my healing journey:
1. What are you holding onto that causes you pain? Surrender it.
My favorite bedtime story used to be when I told myself about the extraordinary life I would live if I weren’t sick. ‘If I were well enough to have children, I would make banana pancakes every morning, and they would wear sweaters I knit for them. No cereal from a box!’ I had an entire morning routine planned for a family I didn’t have, during a time I couldn’t get out of bed. And I’m allergic to bananas! Every New Year’s Eve, when the clock struck midnight, I thought, ‘Maybe this will be the year I get my life back.’ Each birthday I blew out candles on a rainbow chip cake and silently pleaded, ‘Please let this be the year somebody figures out what is wrong with me so I can get up and live again.’
You cannot let what you thought your life would look like rob you of joy in the present moment or gratitude for the gifts you have. This season, or your entire life, might look different than you expected, and it might be darker and more uncomfortable than you hoped. But it can still be meaningful—more meaningful than you imagined. Those trials you’re facing will strengthen you, build character and compassion, and remind you of what truly matters. Last month, with my head held surgically higher than any previous birthday, I blew out my candles and made a new wish. Instead of wishing to get my life back, I accepted it was never really gone and said to myself, ‘May I fully embrace this life, the one that is meant for only me.'”
This story was submitted to Love What Matters by Jessica Dudley. You can follow her journey on Instagram and her blog. Submit your own story here, and subscribe to our best stories in our free newsletter here.
Read more stories like this here:
‘I was told, ‘We didn’t want your head to pop off.’ There was a serious problem.’: Woman diagnosed with Ehlers-Danlos Syndrome after 10 years of being doubted by doctors because ‘it can be very difficult be taken seriously as a teenage girl’
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