What It’s Like to Have Ehlers-Danlos Syndrome: My Life Looks Different Than What I Had Planned
Key takeaways:
It took years for Mariah Metzger to get an accurate diagnosis for the symptoms that caused her so much pain.
Mariah has Ehlers-Danlos syndrome (EDS), a condition that has caused her to have joint pain, fatigue, and a variety of other symptoms.
Having a chronic disability has changed the course of her life in ways she didn’t expect.
My Journey is a series of personal essays about what it's like to cope with a medical condition.
When I was diagnosed with Ehlers-Danlos syndrome (EDS), I was thrilled to finally have a name for what was causing the debilitating symptoms that had controlled my life for more than a decade.
EDS — sometimes called “elastic skin” — refers to a group of rare, inherited connective tissue disorders. The condition makes your joints flexible and your skin and tissues fragile.
The genetic mutation that causes EDS has always been a part of me. But, at age 17, I got a virus that caused my symptoms to spiral out of control. By the age of 19, when I was in college, I could barely walk to my classes or hold a pencil. So I applied for disability accommodations and began to wonder if I could ever have a job, a family, or any semblance of a normal life.
Now, at 29, I work 3 days a week as a personal trainer for clients with chronic health conditions, including EDS. I spend the rest of my time managing my own symptoms, dancing, horseback riding, reading, and being a wife and mom.
I remember my 19-year-old self, teary-eyed and flushed from pain, being sent from doctor to doctor, racking up medical bills and anxiety. And I wish she could have known that there is hope.
Now, I do have a job and a family. But — thanks to EDS — it just looks different than I had planned.
A medical mystery
By the time I was 19, I had seen dozens of doctors and been diagnosed (and un-diagnosed) with Lyme disease, an anxiety disorder, and Still’s disease. I had been tested for bubonic plague, parasites, STDs, HIV, every rheumatological disease, and all the hepatitises. There had been a cancer scare and talk of multiple sclerosis (MS). But the doctors had found nothing to explain my extreme joint pain, fatigue, and other odd symptoms.
Then, I was referred to Johns Hopkins Hospital, in Baltimore, one of the country’s top-ranked medical centers.
They combed through my medical history and took more blood than I thought was possible, but they still couldn’t figure out what was wrong with me. I remember leaving the rheumatologist’s office and slumping against the hallway wall; the fluorescent lights started to blur as tears filled my eyes. Moments before, the rheumatologist had teared up as she gently shook my hand and concluded the visit by saying, “I can see that you are in a lot of pain, but I can’t find anything in your blood work. I have no way to treat you. I’m so sorry.”
My husband and I left Hopkins baffled and hopeless. I was a 20-year-old, newly married college student who was now also a “medical mystery.”
At 21, I got pregnant with my daughter, and many of my symptoms lessened. After a bad bout of postpartum depression, I took a job as a middle school teacher. My fatigue and joint pain were still severe, and the gastrointestinal (GI) issues were never ending. But I loved teaching, and the part-time schedule was good for me.
Then, for Christmas in 2017, my husband bought me materials to study for a personal training certification.
A personal trainer with a disability
I really wanted to be a personal trainer. But, I thought, who would want a trainer with health issues?
After a few weeks of studying, I came to the chapter on special populations. These are my people, I thought. I knew exactly how it felt to be “special” — to want to exercise, but to have to modify everything for a body that didn’t want to cooperate.
My very first client had recently undergone a hip replacement. It was a complex first client but, I reasoned, they wouldn’t all be this complicated.
The second client that signed up with me had five complex health issues. The next client I took on had extreme vertigo that doctors were unable to diagnose the cause of or treat. My book of clients began to fill up with individuals who had MS, Parkinson’s disease, paralysis, GI problems, fibromyalgia, cancer, joint dislocations, osteoporosis, diabetes, and herniated discs, among other conditions.
Somehow, I had found a niche. I was the trainer for people with chronic health conditions.
Recognizing the symptoms of EDS
I continued to see doctors for my severe joint pain. I had also begun having extreme spells of dizziness, during which I would almost pass out. Still, no one knew why these things were happening to me.
One day in 2018, I visited a family friend I hadn’t seen in years. She asked me how I was doing and listened intently as I told her about the symptoms that had been plaguing me. She went to her office computer and pulled up the Ehlers-Danlos Society website.
“My daughter has something called EDS,” she said. “I think you might have this.”
Joint instability, pain and muscle spasms, dizziness, GI problems, fatigue — the list went on.
“Oh my gosh,” I thought. “This is me!”
I emailed my doctor about EDS, and the tests commenced. I spit in a tube and had my genes analyzed, which ruled out 12 types of EDS. The only type I could have was hypermobile Ehlers-Danlos syndrome (hEDS), which is diagnosed with a lengthy checklist created by an international panel of EDS experts.
Unfortunately, many doctors in the U.S. do not use the checklist. One rheumatologist refused to look at it, insisted I didn’t have a genetic disorder, and diagnosed me with rheumatoid arthritis (RA). A different rheumatologist disagreed, saying I had EDS, not RA. I saw a cardiologist, neurologist, and others.
Finally, in 2020, during the COVID-19 pandemic, my primary care doctor collected all the data, looked at the checklist, and made a decision. I had hEDS.
Health looks different when you are chronically ill
Before hEDS took over my life, I was a type-A perfectionist who exercised 20 hours a week and saw limitations as negotiable. Then, I lost my healthy body to a mysterious illness, was invalidated by medical professionals and abandoned by friends, went into six-figures worth of medical debt, and got diagnosed with a condition that will never go away. And I learned that health looks different when you are chronically ill.
Managing my hEDS takes a lot of time, effort, and money. Some days, I cry about it or listen to heavy metal music. Some days, I encourage my clients to be kind to themselves while mentally berating myself for not doing more. Some days, I have to put my dislocated shoulder in a sling and try to explain exercises to clients, because I cannot demonstrate them. There are days I can’t go to work at all.
But my clients understand. They know what it’s like to have to adapt their lives to their bodies. Likewise, I understand when a client comes in with their eyes glazed over in pain. I know how to modify their exercises, not just because of my certifications and credentials but also because of my experiences with back pain, dizziness, knee issues, and bad pain days.
My health journey has shaped my career in ways that my formal education could not. But it has also shaped me as a person. I’m still a bit type A. But I’m over being a perfectionist and have learned that my limitations — and those of others — deserve to be validated.
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