Cara Gael O'Regan is startled when she tests positive for syphilis.

Cara Gael O'Regan is an artist, health advocate, and podcaster who has more than two decades of lived experience with complex chronic illness and the chronic uncertainty that comes along with it. Her painting, Syndrome, was published in the Fall 2015 issue of The Intima: A Journal of Narrative Medicine. She is a Clue Ambassador for menstrual + reproductive health, and a 2016 Stanford Medicine X ePatient Delegate. Cara's podcast, In Sickness + In Health, features interviews with people about their relationships with their bodies and discussions about the intersections with chronic illness, disability, healthcare, and mortality. She tweets about life and living with chronic illness @bimpse, and you can find the podcast @InSicknessPod and at insicknesspod.com.

This story originally aired Feb. 10, 2017.

Story Transcript

When I was unceremoniously dumped via text message, I felt deeply hurt and deeply violated, but I felt really violated because, against my better judgment, I had been having unprotected sex with that person, the whole time we were dating. I felt especially violated once he told that he was also doing that with other people the whole time and I had no idea. I’m somebody who likes to intellectualize things so I don’t have to actually have feelings about them. I decided that I was going to go get an STI test and science would tell me I’m fine. Then I would have to feel okay about this whole thing.

Up to then, compared to most people, I had been pretty responsible. Growing up, my best friend’s mother was actually our high school sex ed teacher. Even though that scarred my dear friend for life, it gave me the tools and the knowledge that I needed to protect myself. I was fairly confident about my status going into this relationship. I had been tested before him and after anyone else.

I decided that I was going to take myself to Planned Parenthood on my next day off. I scooped myself up, feeling slightly empowered but still mostly wounded and as I drove past the abortion protesters that were situated just at the entrance to the strip mall where this facility was located, I got so angry at them and it was such a welcome change from being so angry at myself for getting myself into this situation in the first place.

My mind was swimming with all of the evidence-based things that I wanted to yell at them as I left, but then I found that the door to Planned Parenthood was actually locked. I figured, “Maybe they are opening late today for some undisclosed reason.” I decided to wait.

My lonely party of one was then joined by a pregnant woman who was in her second trimester, a teen couple who kind of couldn’t keep their hands off of each other, and a few older women who definitely had better things to do that day. About an hour and a half later, somebody finally came by and told us that they actually weren’t going to be opening at all that day. They had an internal training workshop that they had to do. Of all the days, it had to be this one.

I drove off, kind of preoccupied with what I was going to do next, didn’t even think about the abortion protesters. I was on a mission – that was definitely clear. I was so determined to get tested. On that day, I went home, I found another Planned Parenthood online and I jumped back in the car. That second Planned Parenthood was thankfully without any protestors and this one was actually open, which was great. By that time of the day, it had gotten pretty crowded so I had to wait quite a while longer.

By the time that I got to actually speak to a nurse, she informed me that the incubation periods for many of the infections that they would be testing for was actually longer than the time it had elapsed since I was last with my partner, which was a bummer.

She told me it was still too early, but she moved forward and did the testing anyway because I was so insistent about it and I told her, “I don't care what kind of samples you need to take from my body. I want the whole panel, everything. Just take them.” I did finally break down crying when I was in their bathroom trying to pee in the sad little Dixie cup that they had given me. Turns out that providing urine samples under duress is not one of my talents and I then realized also that I had completely forgotten to stay hydrated on this day because I was so determined. Getting a blood sample was also really difficult.

By the time I got home, it was kind of early evening, and I was exhausted and very dehydrated and no more comforted by this exercise than I had been when I walked out the door that morning. I think I actually felt worse, but I was happy to put this portion of the ordeal behind me and didn't even think about the test again for a couple weeks, at least not until my phone rang with an unknown number that I let go to voicemail. I immediately regretted letting it go to voicemail once I listened back to the message and heard that it was the New Jersey Board of Health calling to talk to me about the results of some tests I had done.

All it took was hearing Board of Health to make my vagina immediately start burning and send my mind into doomsday scenarios where I definitely had AIDS and definitely had every other sexually transmitted infection known to humankind, possibly even a few we hadn't yet discovered. When I summoned the courage to finally return that phone call, I spoke to a man named Carlos whose cool and calm demeanor made me feel a lot more relaxed.

I would later learn that the reason he was so calm was that compared to some of the shit that he'd seen, this was very small potatoes, and he'd seen some shit. He'd gone into public health after watching almost all of his friends die from AIDS in the eighties and nineties. He'd been with the Board of Health almost twenty years and walked people through these moments of terror every single day.

Talking to people about abnormal test results for him was no more scary than filing an expense report. That's actually kind of scary for some people. But any semblance of chill that I had had went right out the window when he informed me that I had actually tested positive for syphilis.

Apparently it's relatively uncommon for women in the twenty-first century to contract syphilis. This would actually not be the first time or the last time that I would experience a relatively unusual health event. “Weird but not unheard of” was a phrase that I had heard out of the mouths of my health care providers so often over the years it could actually be the title to my memoir.

Carlos explained that it might just be a false positive and so he then proceeded to ask a long series of very detailed questions about my sexual history, more detailed than from anyone I had ever actually had sex with. I remember only his last question because it was the only one that I was able to answer with gusto because it was the only one that had nothing to do with sexual encounters I might have preferred to forget.

He asked, “Have you ever had Lyme disease before?” I just immediately said, “Yes. I contracted it in 2008 after a camping trip but didn't get treated for five months because I was so used to feeling unwell in the first place, I didn't even realize I was sick. But what on earth does Lyme disease have to do with this test result?”

He then explained that Lyme bacteria and the syphilis bacteria are actually both spirochetes and they're kind of cousins of each other. These diagnostic tests are looking at the presence of the antibodies and not for the presence of the bacteria itself. So, hilariously, it’s actually possible for a past Lyme infection to cause a false positive on a syphilis test. Great way to find out.

I was not thrilled with the emotional rollercoaster that this phone call had been so far, but this was music to my ears. He told me that I would have to come in for a confirmation test, but the confirmation test [was] still only fifty percent accurate. My previous partner would need to come in or get tested elsewhere and have his results sent to verify my results.

Carlos asked if I wanted him to handle it or if I would inform my partner and I decided that I was going to do it myself. I decided I was going to write an email and I was going to explain the situation, explain that it was probably a false positive but that the very least he could do was handle this in a swift and sensitive manner. Addressing the email, I remembered suddenly that I had actually deleted his contact information in a moment of spiteful rage. I was sure that I could remember his email address from memory and I typed it in and sent the email as soon as possible because I just wanted this to be done as soon as possible.

Several days went by with no response. I decided that I was going to check his email address against our customer database at work. To my horror and despair, his email was actually nickname.lastname@gmail.com and not firstname.dotlastname@gmail.com as I had misremembered and entered it. I never got an undeliverable message back from that email address so it definitely exists. There are definitely several other people out there with his same name that definitely exist. So somebody definitely got that email but deleted it and had the sense to never contact me. I’m so thankful for that.

I spent the rest of that day at work full of that hot shame and anxiety, just thinking I was going to barf, or pass out, or do both at the same time. I left work, I went straight to my friend's house, and collapsed in her arms weeping and yelling, “This is going to be funny someday, right? We’re going to laugh about this real soon.” When I finish crying, I took a deep breath and sent the email again and this time sent it to the correct address, so good job, me. On my next day off, I headed into the Board of Health for that confirmation test.

It turned out that their protocol was actually to start treatment immediately, which meant before getting the results of the confirmation test, before getting the results from that last partner. It turned out also that that treatment is antibiotic shots … in your butt … several of them over the course of several weeks.

Over those several weeks, despite the email making it to the correct inbox this time, I had to follow up with my partner like four or five times before he finally went and got tested. By that time, I had had three full free syringes full of antibiotics injected directly into my butt cheeks all the while still totally unsure if I had actually contracted syphilis or if this was just another in a long string of misdiagnoses.

At the end of it all, I never did actually have syphilis, but I did get a yeast infection from the antibiotics. That was fun. This story has a happy ending. As I was recovering from that yeast infection, I met my current partner. This summer, we’re together for five years. Two and a half years after that intensely humiliating medical surprise, I would finally start to get answers about why I had had so many of those “weird but not unheard of” health events in my life.

After twenty years on explained symptoms, I would finally get diagnosed with a genetic disorder that most people have never heard of. No one is quite sure how it's pronounced, and it often requires that I give people several basic anatomy and physiology lessons before I can even explain it to people.

Along the way, I've learned that what we don't know about the human body so far outsizes what little we do know. But the doctors that I'll see in my lifetime are under the impression that the exact opposite of that is true. I learned that being chronically ill means you often need to learn to live with total uncertainty while floating through a system that is built on the illusion of absolute certainty, and I learned that the results of diagnostic tests are not as black and white as we'd like to think that they are. And thankfully, the story is very funny to me now. Thank you.