And that was just the beginning: “From that point on, I underwent a roller coaster of strange symptoms that no doctor I saw could quite identify,” she says. In fact, it took 20 years for her to finally receive a diagnosis.
Here, O’Rourke documents her personal health journey, how she navigates her diagnosis, and her advice for others dealing with an invisible illness.
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?”
Today, O’Rourke prioritizes letting go—rather than fighting her fatigue, she tries to not push her body too hard. Sometimes she needs to go to bed by 9 p.m. to feel adequately energized the next morning, and that’s OK. “Joy is medicine, avoiding stress is medicine—all of these things are really important, and I don’t have to punish myself in order to do well,” she says.
This philosophy translates to her relationship with food as well. “I try to use food to nourish my body and to make every cellular process go as smoothly as it could,” she notes. “[I view food as] a wonderful part of my life that strengthens me and brings me health…it led to a really profound shift in my everyday life.”
Most of all, though, she realizes that her illness was much bigger than her individual story. “So many of us [have] had autoimmune diseases or chronic fatigue syndrome and were being ignored and invalidated. That changed my philosophy from American hyper-individualism to an ethic of care and of social interconnectedness that became really important to my sense of the journey I was on.”
First things first: If O’Rourke could go back in time, she would tell her younger self to have compassion. “I spent a lot of time feeling that the illness was somehow my fault or an aspect of my character instead of thinking my illness is a consequence of all kinds of environmental and genetic accidents and realities,” she explains. Be gentle with yourself—it’s a journey.
Additionally, she suggests advocating for yourself at the doctor, and if a medical professional dismisses you or tells you it’s all in your head, seek out other opinions if you can. “I took my doctors’ reassurances at face value, and I didn’t say firmly enough to them that something was really wrong.”
And when you do finally get answers and tweak your lifestyle to meet your needs, don’t be afraid to speak up about your diagnosis. Sometimes you might have to turn down a late-night dinner or delegate your responsibilities at work if you’re not feeling your best, and it’s important to give yourself grace in those moments.
“It was so challenging for me…I was really silent around it at the time,” O’Rourke says. “I do think there’s a generation of people who are better about asserting the reality of their own lived experience.” We still have a ways to go, but as O’Rourke demonstrates, sharing your story is key to creating a more respectful, understanding community of care.