The Missing Piece: Unraveling a Decade of Chronic Illness

Megan F
Aug 2
6 min read

Written by: Megan Fordon

August 2nd, 2025

This week, my decade-long journey through extreme fatigue, mental exhaustion, and pervasive pain finally reached a turning point. After what felt like an endless search for answers, I received a diagnosis: hypermobile Ehlers-Danlos Syndrome (hEDS). This diagnosis was more than just a medical term; it was the missing piece that connected years of seemingly unrelated symptoms, finally bringing clarity to a life often clouded by confusion and dismissed concerns. It allowed me to shed the heavy burden of feeling misunderstood and thinking I was "crazy."

You might assume I'm feeling immense relief, and in many ways, I am. But a profound sadness also washes over me when I think of my younger self. The thought of all the years I spent suffering, the countless times I was told "there's nothing we can do," and the lack of care from those who were supposed to help, is heartbreaking.

I'm sharing my story today with the hope that it might spare someone else from a similar journey, or perhaps, offer a sense of recognition and solidarity to those who have walked a similar path.

A Childhood Unraveled by Unseen Struggles

I was born on February 6th, 1999, at Beaumont Hospital in Grosse Pointe, Michigan. Aside from webbed toes, which my parents opted not to address surgically, I was considered a "healthy" and "happy" baby, even nicknamed "honey" by the nurses for my blonde hair. My early years were filled with love but also a touch of chaos. My parents, in their early 30s with three small children and a fourth on the way, navigated the late 90s and early 2000s without the benefit of modern insights into trauma or mental health.

I've been told bits and pieces from those early days: my older brothers, though adoring, would sometimes accidentally hurt me; my seemingly unconcerned laughter after my grandma fell down the stairs with me as an infant; and my dad dislocating my arm while playing "airplane," only to tell me to "stop crying, you big baby." These were anecdotes, family stories that, in hindsight, held clues to a developing physical vulnerability. Even my persistent teeth grinding, loud enough to be heard across the hall, was dismissed by doctors as genetic and harmless—a pattern of neglect from the medical system that began early.

The truly challenging times began after my younger brother's birth, when he became severely ill. For two agonizing years, he was a sickly pale blue, so thin you could see the outline of his ribs. The eventual diagnosis of celiac disease for him, and subsequently for both my parents, cast a long shadow over our home. I lived in constant fear of developing celiac disease myself, haunted by the memory of my brother's violent vomiting sessions after accidental gluten exposure. I'd lie awake, ears covered, praying for the retching to stop. This environment taught me to internalize my fears, to become what I now understand as a "glass child"—just good enough to avoid drawing attention, often seen right through, existing quietly to minimize stress.

Despite outward appearances of a functional life, my nights were spent obsessing over fears and mistakes, praying I wouldn't die. This internal turmoil manifested physically. My teeth grinding was dismissed, and a doctor's insistence that I continue playing soccer after a traumatic puking incident in fourth grade, despite my intense fear, only further ingrained the idea that my body's reactions were something to be overcome, not understood. By the end of fifth grade, I got my period and, riddled with shame, kept it secret for a year.

The Cascade of Unexplained Symptoms

Eighth grade brought new mysteries: excessive sweating and a terrible, stabbing stomach pain that would only subside if I lay flat on the ground. Initially dismissed as gas, it persisted into my freshman year of high school, leading to an endoscopy that found nothing. The pain eventually faded, or perhaps I simply dissociated from it. Migraines followed, leading to medication, a bite guard for my grinding, and glasses, offering some relief but not complete freedom. My periods became a nightmare—heavy bleeding, debilitating cramps, eventually "managed" with birth control.

Alongside the physical complaints were severe mental health issues that I kept private. It wasn't until my sophomore year of high school, when my friends alerted my mom to the severity, that I started seeing a therapist and a psychiatrist. However, I didn’t receive much support from either. I hid from both of them because their seemingly uninterested manner triggered long-held beliefs that my problems were "stupid" and not worth others' time. My psychiatrist visits didn't last more than five minutes. He'd ask two or three questions, and within minutes, I'd walk out the door with a prescription for an antidepressant that didn't work.

Junior year brought an overwhelming, debilitating exhaustion. I couldn't keep my eyes open, and severe brain fog made it impossible to focus in class. Around the same time, I injured my SI joint during track, and physical therapy finally offered a glimmer of understanding about my body, strengthening muscles and improving posture.

A Glimmer of Hope, Followed by More Uncertainty

In my senior year of high school, I had a glimpse of what felt like being listened to by a doctor when a new psychiatrist wondered if a sleep disorder could be the reason for my excessive sleepiness. Lo and behold, a sleep study confirmed his suspicions, and I was diagnosed with narcolepsy. Though my school didn't take it seriously, medication was life-changing. "Woah, is this how normal people feel?" I remember thinking the first time I took it.

While the medication alleviated some of the brain fog and fatigue, my physical health continued to decline. One of the most severe instances of neglect by a doctor occurred around the age of 17, after developing pulsatile tinnitus following an illness. After a few tests, the doctor simply told me there was nothing structurally wrong and therefore, nothing he could do. I was dumbfounded and pleaded with him, "So you’re saying I have to live the rest of my life hearing a heartbeat in my ear?"

During my sophomore year of college, a severe reaction to antibiotics after a cyst removal brought back the familiar stabbing stomach pain, amplified. Despite feeling horrendous, I pushed through, traveling for a friend's 21st birthday. I fell asleep crying that night, only to wake to the worst pain I'd ever experienced, followed by an onslaught of symptoms that would later be defined as my first panic attack.

Following this first instance, panic disorder consumed my life. However, I now wonder if this was my body screaming at me to pay attention. But I was so stuck in doing what I had been taught: gaslighting myself and dismissing the pain.

For months, I couldn't escape the panic, contemplating whether there was a point to living if I couldn't leave the house. Eventually, I took matters into my own hands, becoming a health nut: twice-daily yoga, a strict diet, and taking supplements recommended by a functional doctor. Surprisingly, it helped. Perhaps because I was finally listening to my body.

Connecting the Dots: A Diagnosis and a Path Forward

Things were relatively stable until the return to "normal" life after the pandemic. Dizziness, lightheadedness, stomach issues, fatigue, anxiety, and panic returned with a vengeance. My nervous system became completely dysregulated.

I had heard about POTS (Postural Orthostatic Tachycardia Syndrome) in hypersomnia and narcolepsy Facebook groups, but it was always described as a fainting disorder, which didn't fit my experience. Then, thanks to TikTok, I learned that fainting isn't a universal symptom of POTS, and critically, that it's often related to Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that can cause a wide array of issues often misunderstood by medical professionals.

It took time and repeated exposure to this information for me to finally consider the possibility and bring it up to my doctor this year. And I am so incredibly glad I did. Because that's what led me to today, to this diagnosis, and to finally connecting all the scattered pieces of my health puzzle:

The unexplained stomach issues, headaches, and muscle tears were the hypermobility of hEDS.
My chronic rhinitis and sinus issues were related to MCAS (Mast Cell Activation Syndrome), a common comorbidity.
The TMJ and pulsatile tinnitus were symptoms of craniocervical instability, and a recent discovery of cervical ribs pushing on an artery, causing thoracic outlet syndrome.
The lightheadedness, fatigue, and panic attacks were the hallmarks of POTS.

This diagnosis is not an end, but a new beginning. While I grieve the years I lost, I am also motivated by the opportunity I never thought I’d have: to finally understand myself and my body fully. I've been given the chance to reframe the narrative I've told myself for the past 10 years. To listen to my body when it's sending me signals, validate my feelings instead of fighting against them, and pursue treatments that actually address the root causes of my struggles.

If any of my story resonates with you, know that you are not alone. Keep searching, keep advocating for yourself, and never give up on finding the answers.

Each day poses its challenges. When you lose hope and can't find the will to do it for yourself, do it for the kid who deserved better.