Published: 19/01/2021

I grieved my diagnosis, and started to build a life I never would have imagined

One evening in 2007, I was on the computer at my home in Arlington, Virginia, browsing articles on CNN’s website when a headline caught my eye about a children’s band called The Wiggles. It said that a founding member had to quit performing due to a rare medical condition. It went on to describe his condition, orthostatic intolerance (OI), which I had never heard of. Curious, I googled it and felt the hairs on my arms rise as I read.

The symptoms sounded very familiar. I googled on and read about a version of OI called Postural Orthostatic Tachycardia Syndrome (POTS). The symptoms included a drop in blood pressure upon standing, brain fog, muscle cramps, joint pain, headaches, and so on. Gasp! This was ME!

I was overwhelmed with excitement. I did a search for a POTS specialist and found one close by in Washington, D.C. I explained everything to my husband Dan and he was thrilled, too. I booked an appointment with the doctor, armed with the articles on POTS. The day of the appointment I practically ran in there and waved the papers in his amused face.

“I have this! Test me for it!”

An appointment was made for a tilt-table test, a torturous procedure where you are strapped to a tabletop and hooked up to electrodes that monitor blood pressure and heart rate as the table tilts slowly over the course of an hour. After a half-hour, my vision had become blurry and I was about to pass out so they ended the test. The attending doctor said I absolutely had POTS, no question about it.

More tests were run – blood work, an MRI,  a CAT scan, a physical, conducted at Georgetown and Johns Hopkins University. The testing dragged on for months.

Finally, after nearly a year, the doctor called me in to discuss the results. Dan and I made our way up the high rise to his office. He quietly explained my diagnosis. The POTs turned out to be a secondary condition. My main condition was called Ehlers-Danlos syndrome, type III, now called hypermobile Ehlers-Danlos syndrome (hEDS). He said it was largely untreatable. But that wasn’t all, I also had chronic fatigue immune dysfunction.

He paused and quietly said, “You don’t even realize how much pain you’re in.”

“You’re going to live with the quality of life of someone in a state of permanent congestive heart failure. I’m so sorry,” he said.

He said that to raise my blood pressure I should increase my intake of water and salt. I could take Tylenol for my constant muscle and joint pain and he could try out different kinds of medications, to experiment and see if anything helps but that was about it.

I was stunned. Numb and speechless. Dan and I muttered our thanks and shuffled off to the elevator.

When the elevator doors opened down on the parking level, I took a few steps out and doubled-over, dissolving into sobs while D held me upright. He ushered me to our car. The doctor’s words echoed in my head, washed over me in waves, their full import only starting to sink in. My dreams – of being an anthropologist by day, a musician by night, of leading a rich, full life had evaporated.

I fell into a depression. I did a deep google on EDS but in those days there was little information available. I was 36 years old and felt very alone.

Fast forward to 2020. I’m divorced, no kids, living with my mom in Los Angeles. A pandemic is rampaging throughout the world yet somehow, I’m still here. I’ve had to make adjustments, mainly in my head. After getting over the initial grief after the diagnosis, I designed a new life, one I never would have imagined living when I was growing up. I’ve pushed through the pain and had adventures – I worked in a national park, lived by myself in a rustic cabin in the mountains up at 7,000 feet for a year. I’ve taken numerous road trips and solo hikes in the wilderness. I became a landscape photographer and an award-winning mosaic artist with a number of exhibitions under my belt and so on.

I would say my health these days is stable. I’m not much worse for wear than I was back when I was diagnosed (speaking of which, my diagnosis was updated. It’s no longer CFIDS but Mast Cell Activation syndrome.)

I try to count my blessings. Sure, I still have pain and need to be cautious in everything I do, but I’ve never had a heart attack, a stroke, diabetes, or cancer. I go for walks, cook delicious meals, and hide from Covid. Honestly, I’m just amazed I’ve survived these 51 years and take each day, each moment, as it comes. 

My motto in life – Que sera sera, whatever will be, will be.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list