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After that first needlelike experience, O’Rourke faced one symptom after the next: intense bouts of fatigue, drenching night sweats, vertigo, brain fog, cartilage tears, abdominal pain during her period… the list goes on. And yet, all her labs looked OK — so with each passing symptom, doctors rattled off potential causes.
Those electric shocks? Probably just really dry skin, said her dermatologist. The abdominal period pain? Maybe it’s endometriosis, her OB / GYN proposed. “I’ll never forget when she said, ‘It doesn’t really matter unless you’re trying to get pregnant,’ which was strange because it mattered to me — I was in extraordinary pain!” O’Rourke recounts. And then there’s the aggravating, You’re probably just stressed! excuse. O’Rourke heard it all.
After seeking out specialists — integrative doctors, acupuncturists, women’s health specialists, and rheumatologists — she was belatedly diagnosed with autoimmune thyroiditis. “So I have Hashimoto’s, which is an autoimmune thyroid condition,” she says. “In the way of the roller coaster, though, I didn’t get fully better after being treated for this thyroid disease. So my doctor said to me: ‘Look, I think you just have to accept that your life is never going to be the way it once was. You’re going to function at 80% forever. ‘”
Of course, that’s a frustrating and scary result for anyone to hear, but still, O’Rourke was determined to get to the bottom of her symptoms. “I was still sick, so I just kept searching for answers.” Finally, she ended up with an infectious disease doctor who did a full panel and diagnosed O’Rourke with Lyme disease. “So I then underwent radical antibiotic treatment for months and months — that immediately did get me much better from where I had been, and yet even then I didn’t get fully better,” she says.
Finally, after seeing a cardiologist just this past spring, O’Rourke learned that she has a genetic condition called Hypermobile Ehlers-Danlos syndrome: “It’s a group of connective tissue disorders, where you have a gene that means that you don’t make collagen in the way everyone else does, “she explains. “Your collagen is more frail, more fragile, and more likely to tear.”
Suddenly, all her symptoms made sense: The cartilage tears, the fatigue, the neurological issues. “It’s more likely to lead you to have dysautonomia, or problems with the autonomic nervous system, in which your veins don’t adequately constrict when you stand up, leading to faintness, dizziness, and brain fog.”
O’Rourke finally received her diagnosis — but it took about a 20-year period for her to finally get answers. “Ten years after I first went to the doctor saying, ‘Something’s wrong when I get my period,’ I got diagnosed with endometriosis,” she says. “Five years after that, I got the autoimmune diagnosis, and then two years later, so 17 years after the first Lyme symptoms, I was treated for Lyme disease.” She poses: “Why had it taken so long to get recognition and diagnosis for what was going on with me?”
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