Heather’s Story: The Hurt and Healing

Living with a chronic illness often means navigating uncertainty, searching for answers, and learning to adapt to a life that looks very different from the one you once imagined. While Ehlers-Danlos syndrome (EDS) is not classified as an autoimmune disease, many people living with EDS face challenges that will feel familiar to those in the autoimmune community, including chronic pain, diagnostic delays, complex symptoms, and the emotional toll of an often invisible condition.

In her story, Heather shares her journey from years of unexplained symptoms and repeated surgeries to a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), and the resilience, self-discovery, and hope she found along the way.

Heather’s Story:

I was born with Hypermobile Ehlers-Danlos Syndrome

Imagine going 23 years of your life not knowing you have a genetic connective tissue disorder. Growing up, I experienced many symptoms that were played off as minor or as growing pains. I was a two-sport athlete, with my main passion being soccer, playing for over 14 years on the same team. I was always tall. My mom loves to tell me that I could no longer fit in a baby carrier at three months old because my legs were too long.

I struggled with a lot of joint pain growing up. I could do all the “cool party tricks”, like touching my thumbs to my wrists with no problem. What I thought was normal actually wasn’t. I woke up with a different kind of pain I had never experienced before.

During my freshman-year basketball season, my life changed forever overnight.

Throughout the season, I had been slowly getting worse, to the point that I developed severe left leg pain, known as sciatica, from two herniated discs and very advanced spinal stenosis that caused foot drop. I became homeschooled midway through the school year.

On August 16, 2016, I had a double laminectomy and double discectomy. A laminectomy consists of removing part of the lamina bone to reach the injured herniated disc. A discectomy is the removal of unwanted disc material in the spinal canal. The double just means two different levels in my spine: L4-L5-L5-S1. I returned to a new school that September and slowly improved over the next seven years, though with what was considered “normal” back pain.

No one had ever given me an answer as to why I woke up one day needing major back surgery at such a young age, with no accident or injury.

Fast forward to 2022. I began experiencing extreme fatigue and worsening joint pain. I saw a local rheumatologist who told me I was vitamin D deficient and left it at that. Two months later, I woke up with my left arm and half of my left hand numb and tingling. I thought I just needed to shake it off, but that was not the case. I had just started my first job as a Certified Clinical Medical Assistant, and now I needed ulnar nerve surgery at twenty-one.

Once again, I woke up needing surgery with no clear explanation. I was frustrated and felt there had to be a reason behind all of this, but my concerns were dismissed by my pediatricians and the rheumatologist.

In early 2023, while at work, I felt shooting nerve pain going down my previously injured leg. I was in denial, but not for long, as the pain quickly became unbearable and the foot drop returned. I had re-herniated the same two discs at L4–L5 and L5–S1.

I needed a spinal fusion; I was practically bone-on-bone.

During the fusion, my surgeon had to spend an additional two hours removing an abnormal amount of scar tissue. He referred me to rheumatology for possible Hypermobile Ehlers-Danlos Syndrome. Being chronically ill can be unbearably isolating. There are few, if any, who truly understand what it’s like.

We suffer in silence, not wanting to be a burden, repeating the same daily cycle over and over. Meanwhile, the world moves on around us, and we feel trapped in a haunting, never-ending time loop, mourning not just who we’ve lost, but who we used to be.

During my hospital stay, doctors also suggested a rheumatology referral. I had many key indicators: difficulty holding IVs, translucent and doughy skin, very flat feet, and hypermobility in most areas of my body, along with other signs. During my spine surgeries in 2023, my incisions had to be surgically glued shut while I was awake. In 2025, after my CSF repair surgery, my incision reopened after stitch removal performed by plastic surgery, again while I was awake.

The new rheumatologist diagnosed me with hypermobile Ehlers-Danlos Syndrome on the spot. He said I was a classic hEDS patient based on my appearance alone.

It’s heartbreaking that I spent twenty-three years wondering what was wrong with me, when a doctor less than two hundred miles away could diagnose me simply by using his eyes.

HEDS is a genetic connective tissue disorder. It can cause stretchy skin, chronic pain, overly flexible joints, fatigue, gastrointestinal issues, and it affects nearly every part of the human body. HEDS does not yet have a specific genetic test; diagnosis is based on a Beighton score, medical history, and physical evaluation.

There is no cure, only management.

Medication has helped me manage chronic pain and improve my hyper-POTS. I am still working to find a dose that works best for me. Unfortunately, HEDS affects many aspects of the body: mast cell activation, POTS, CRPS, inflammation, spinal instability, poor wound healing, small fiber neuropathy, IBS, pelvic prolapse, endometriosis, PCOS (currently under evaluation), joint subluxation, easy bruising, and pelvic floor dysfunction.

The way I explain it to people is this: a “normal” person’s body is held together with glue, and people with HEDS lack that glue in almost every part of their body.

Grief has five stages: denial, bargaining, anger, depression, and acceptance. Most people experience it after losing a loved one, but for those of us with chronic illness, grief takes on a different shape. We grieve the person we used to be before sickness changed everything.

The truth I wish I had encountered earlier is this: “Terminal illness is a death sentence. Chronic illness is a life sentence.”

It’s not a temporary struggle. It’s a lifetime of starting over, learning to live in a body that feels like a stranger, one that has betrayed you.

In 2024, I had yet another surgery on my right elbow (my dominant arm), the third surgery of my life for the same issue. At least this time, I finally had an answer as to why. HEDS changed my life overnight when I was fifteen. If only that little girl knew the journey that lay ahead. Today, I have experienced eight hospital stays, two inpatient rehabilitation stays, four spine surgeries, more than ten epidurals, three blood patches, two myelograms, two elbow surgeries, deterioration of my autonomic nervous system, a migraine disorder, and one life-changing surgery that I am only a year post-op from. HEDS marked the beginning of my health struggles at fifteen and accelerated the deterioration of my body at twenty-one.

My passion and love for sports were taken from me. I don’t get to use the certifications I worked so hard for. I am still figuring out who I am every day, with a body that says “no” and a mind that says “yes.” Some days, I feel incredibly unaccomplished and behind for my age.

Being chronically ill has taught me some of life’s hardest lessons.

Of course, there are still many lessons to learn, but it’s the hard times that teach us the most valuable lessons. I am learning to accept myself for what I bring to the table and for the person I am becoming. I am trying to wear my scars proudly, as reminders of what I have survived.

My journey has reshaped my understanding of life’s purpose, and I’ve realized it all comes down to one thing: love.

It has shown me resilience, strength, wisdom, and a respect for myself I never knew existed. What I remind myself at the end of the day is this: you are nothing without your health. Take care of yourself. Chronic illness comes in many forms, but the most important ones are often invisible to the naked eye. Be kind.

My heart is heavy for the fifteen-year-old girl who was oblivious to the journey ahead, but it also feels pride for the strength and resilience it has taken to get this far. I am aware that this is my life’s journey, but I refuse to let it define who I am. I cried until there were no tears left and lived long stretches consumed by sadness. Even in moments of happiness, I found it difficult to allow myself joy. Hope felt impossible when my inner world was caught in a relentless loop, a rollercoaster with no end. Through it all, I’ve learned that mental health is vital. It is no longer optional; it is a priority.

As my father always said, “Don’t make a permanent decision on a temporary timeline.”

Through the darkest days, I’ve realized my best and happiest days are still ahead.

I am still searching for my light and purpose, but I know the best version of myself shines when I am surrounded by people who love me unapologetically and authentically. For so long, I felt ashamed, embarrassed, and compelled to shrink because of my illness. Now, I am on fire to raise awareness for these complex conditions, even if it helps just one person.

– Heather

The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.