Everyone's HSD/hEDS diagnostic journey is unique

Who am I?

I'm a scientist and teacher who became a self-taught expert on HSD after insomnia and neck pain derailed my life. I grew up on a farm, earned degrees in Environmental Economics, Botany, and Natural Resources Science & Management, and spent 15 years researching the ecology and sustainability of moss gathering and another 15 on the structural complexity of natural and old-growth forests. As a professional ecologist, I authored or co-authored >50 published scientific papers, and as a global expert on multivariate statistics in ecology I taught >85 short courses.

But although I didn't know I had it until after 50, eventually HSD caught up with me. In recent years, I've spent my "good days" researching the condition. My books and this site are the products of that ongoing effort.

What is my HSD story?

Like almost everyone else with mild hEDS, I’ve always had some bodily quirks but had long ago figured out how to work around them and so never thought they were any big deal. In fact, I prided myself on how adeptly I had developed compensatory ‘work-arounds’, ranging from behavioral avoidance sold as “preference” to symptom mitigation with pills and therapy. Eventually, however, the number of quirks increased with each passing year and became disruptive enough to be called ‘symptoms’. When I finally did seek out medical help, I got virtually nowhere—either in traditional medicine (one symptom at a time) or alternative (holistic) medicine.

So, my life gradually fell apart.

There were fewer and fewer things I could just do: travel, work out, hobbies. It got harder and harder to figure out what I could eat without triggering reactive hypoglycemia, acid reflux, or severe bloating. I found myself suicidal for no apparent reason, developed severe insomnia, and starting getting faint from low blood pressure. My gums receded, I grew skin cysts, milia, and skin tags like crazy, and despite never bearing children my bladder prolapsed one day. Joint pain started in earnest, at first mostly in my neck and after activity but later in most joints and without warning. I could no longer work full-time…and then even part-time. Finally, between poor memory, fatigue, and brain fog I very nearly stopped functioning at all.

And the whole time, I was so ashamed I hid it from everyone. At first my work-arounds and strategic scheduling meant no one really noticed, but that doesn’t mean it didn’t take a toll. For example, early in my career I stopped going to scientific conferences (once a critical venue for academic networking) to avoid the migraines triggered by light contrast during presentations, and I’ll never forget the dirty look I got from an elderly houseguest when I had to steal back the posture pillow he assumed had been provided for his comfort.

Eventually my social life dwindled, as I increasingly avoided eating out and frequently cancelled dates. I pretended I wanted to work less, and not only didn’t tell my friends or family what was going on, but made sure to put on a smile so they wouldn’t suspect how bad it had become. When I finally fessed up to how bad things were, the initial reaction (by everyone) was literal disbelief—I had done too good a job of covering up. When the symptoms finally became too obvious for anyone to ignore (nothing like retching in the back of the car to get your attention), it was actually a relief to have the ‘proof’ they needed to adjust expectations and to give myself permission to finally face the state I was in.

Even my marriage suffered, because I wasn’t carrying my weight, yet had no ‘excuse’.

Coming ‘clean’ was the first step toward turning things around, but it wasn’t enough. By this time, I had spent years traipsing from one specialist to another, who invariably became stumped by my symptoms and sent me on to the next or simply offered an apology and pushed me out the door. I turned to alternative medicine, trying this and that without success—and racking up even more bills that were getting harder to pay as my earnings declined. It had long been clear that it was going to be up to me to figure out what was wrong, but I had no medical training and the clues were few and far between. I didn’t even know what to google!

At least, until I disciplined myself to treat 'me' as a research project: document my symptoms, look up ALL the possible causes of each and every one of them, systematically rule out what didn’t fit, and piece together what was left. Fortunately, my early background was in biology, I had plenty of practice reading scientific papers, I still had access to the university library, and my brain worked at least a couple hours on at least some days. But honestly, I only tripped across HSD because a strain-counterstrain therapist once hinted that I should investigate my “vagus nerve” (whatever that was), which started a search that led first to dysautonomia, then to an applied kinesiologist who identified referred gastrointestinal pain and zinc deficiency, and finally to a prolotherapist to whom it was “obvious” that I had hypermobile Ehlers-Danlos Syndrome (hEDS).

Even then I wasn’t convinced: it took reading hundreds of scientific papers, tracking down family medical history, and working with my primary physician to rule out every other explanation before I was ready to find a rheumatologist qualified to diagnose hEDS. By the time I found one and got an appointment, I was pretty sure…and then began to worry that my symptoms wouldn’t be bad enough to meet the criteria—but within minutes he confirmed it, and that was that: I finally had a diagnosis! Three years after I started my research, 11 years after I first sought treatment, 14 years after the first serious life disruption, 23 years after the first workarounds as an adult, and 45 years after my first inexplicable childhood symptoms.

That’s when I realized that life could have been so much better...
if only someone had told me the things I've had to learn on my own.

So, why did I make this site? Because...

• I got tired of not knowing what was fact and what was just opinion,

• misinformation or even partial information is outright dangerous,

• everyone's experience is different and non-transferable,

• no one else seems to have this focus, and

• I can do it (thanks to a scientific background and access to the research).