I’m going to write a bit about something pretty personal here, which is a tad unusual. As many of my friends know, I became extremely ill in late September / early October of 2016. I had just moved back across country, from San Francisco to Providence, to teach Experimental Poets of Color at Brown. I loved being back at Brown, on the east coast, near family and friends. I was also teaching a poetry workshop for the super-rad Frequency Writers, and by the end of that 4-week class I was sick with what I thought was a bad cold. The cold never went away. I was sick through the terror of the election, through some non-profit board issues, through my super-phenomenal class. I was sick through my partner’s visits, and by the time he came out for his Thanksgiving break I was so sick that I couldn’t get myself groceries, couldn’t cook for myself, could barely get out of bed and take a shower.
I’ve had ongoing health issues for many years now: undiagnosed chronic pain, and a few diagnosed neurodivergences that have been well managed for years with medication, among other things. So I’m no stranger to being sick, or to being a medical mystery. When I first got sick, as I said, I assumed it was a bad cold. One of my roommates works with young children and had been sick, so I figured I caught it from him. When two weeks later I still wasn’t feeling better, I went to a CVS minute clinic to see if it was something like the flu or pneumonia or strep. The (white cis male) nurse there said I had probably just gotten two colds in a row and would feel better soon, and recommended cough medicine. Another week later, and I was feeling worse, so I decided to see my PCP.
I’d had a terrible queerphobic experience with a doctor supposedly on the “trans team” at Thundermist in RI, so I went back to my former PCP in Boston, a lovely and kind cis white man who I liked because he always seemed willing to listen to me, and trusted me. That may not seem like a big deal, but talk to most any woman, much less a queer or non-white or trans femme person, and you’ll hear enough anecdotal evidence of being dismissed, gaslit, and even ridiculed by their doctors to further evidence those studies about how women’s pain is taken less seriously (not to mention people of color, the group most affected by medical discrimination) [that’s officially the most depressing series of links I’ve ever created]. So it is a big deal to me to find a doctor who treats me with respect, and kindness, and even encourages me to advocate for myself and do my own research and come with questions. Which I did.
I wondered if maybe I had mono. Or strep or pneumonia or walking pneumonia, because that cough still hadn’t gone away, and I’d had strep that turned into walking pneumonia before. My doctor examined me and said no, not any of those things. I was exhausted all the time, I could barely get through my teaching day, and it took me a full day to recover after every class. I was falling behind in everything, and I couldn’t manage basic care for myself like doing laundry. There were days that I didn’t leave the house because I didn’t have the energy to get dressed much less walk down a flight of stairs. I described it as being able to do one thing at a time. So I could get up and brush my teeth, and then I had to rest before doing literally anything else. For an hour, at least. He agreed this was alarming, and ordered bloodwork to check for the most likely causes: thyroid, autoimmune disorder, or vitamin deficiency.
Two weeks later, with no improvement, the bloodwork came back normal. I went back in to see him to see what we could do next, and he said that he thought I was probably experiencing a severe depressive episode. I’ve been diagnosed and have managed depression for years, and have had periods of severe depression, but had never experienced anything like this before. Still, I thought, it’s possible, given all the stress of the year. By this point the semester was over, so we upped my antidepressants by more than twice, and I went out to San Francisco to visit my partner for a few weeks. The antidepressants seemed to have no measurable effect, and though I was being more cared for in San Francisco I still had no energy.
When I came back at the end of January I went back in to see my doctor again. There were other medical things I needed to do before potentially losing health insurance with the threatened repeal of the ACA, including have my IUD replaced, and I wanted to try to get some answers. Having done some research for me, a friend had suggested I ask about Chronic Fatigue Syndrome, a poorly-understood autoimmune disorder. My partner had done his own research and wondered if my symptoms might be related to my now-10-year-old copper IUD. I asked the doctor, and he said that it couldn’t be related to the IUD, and that there was really no way to test for Chronic Fatigue since it’s a diagnosis of exclusion. I left with no new tests ordered, no plan for continuing to try to figure out a diagnosis other than “depression” and feeling not only exhausted but also hopeless.
Despite the upped antidepressant, I began considering whether or not I wanted to live my life like this. Suicidal ideation is something that I’ve had on and off, and is something that is manageable for me with the proper support. But I’d never experienced such strong hopelessness before, such a complete and consuming sense of hopelessness. I knew that I should be continuing to advocate for myself, but I just couldn’t do it. I didn’t have the energy, or the willpower to keep fighting. I enlisted the support of nearby friends and family to get my basic needs met, and started to resign myself to trying to make a life with 10% of the capacity I had previously had, on my best days, and many many days with close to 0% capacity. I thought a lot about value, and worth, and my own new sense of worthlessness, and ableism, and capitalism. I read a lot about how capitalism is premised on the most damaging kind of ableism, and finally understood that a radical rejection of capitalism and it’s colonialism, ableism, and misogyny would require me to believe that I had value not for what I do but for who I am. And that those two things were separate.
At some point towards the beginning of April, I got a phone call from an ob/gyn referral to schedule an appointment to have my IUD replaced. It was time (the copper IUD lasts about 10 years) and I had decided that I wanted to replace it with a hormonal IUD to ease the side effects of worsened cramps and heavier, longer periods. It was going to be tricky, since the string wasn’t visible anymore, and I had been dreading it for years. But they called me, so I scheduled the appointment, and asked a friend to come hold my hand.
I’ll skip the details, but getting the IUD removed was the most excruciating thing that I’ve ever had happen to my body. And the important takeaway is that it didn’t need to be as bad as it was. I had scheduled the appointment at a hospital specifically because my referral was for an ultrasound guided removal and placement of the new one. When I got there, there was no ultrasound in the room. The RNP performing the operation seemed surprised when I said that’s what I had been referred for, and assured me that they’d be able to see the string. She didn’t believe me when I told her that for the past 8 years I’d had to have it checked annually by ultrasound because the string wasn’t visible. She said it was probably “right up inside” my cervix and would be easy to get with a small spiral brush. I tried to convince her that I had had the consultations, and was referred specifically because I was going to need the ultrasound, but she dismissed me, and I was too tired to fight harder for myself. And in the end, she was able to do it without the ultrasound, but it took significantly longer, and was significantly more painful and difficult than it should have been. At the end of the procedure I was screaming and sobbing in pain, I thought I might pass out, and had to lay on the table sobbing for several minutes while my friend held me before I could even sit up.
My friend took me home, and got me dinner and drew me a bath and I started to feel better. I went home, still in a lot of pain, and went right to bed. And the next day I woke up and felt better. Not just that the pain in my uterus had subsided significantly, but I was more energetic. It felt like a good day, but much better. That day my partner flew in and I was able to pick him up at the airport, which I hadn’t been able to do the previous few visits. And I was energetic enough to drive back. He said I seemed more myself than he had seen me since September. I felt more myself too. I didn’t want to get my hopes up, I’d had some good days before and then “paid for it” for days afterwards. But the next day I felt even better. We went out with friends, and then to a concert. I hadn’t been able to do more than one thing every few days in months, and here I was doing two things in the same day, and I felt good. Happy. Energized. And the next day I felt even better. By the fourth day after having my IUD removed I experienced a complete cessation of all my symptoms (fatigue, brain fog, memory loss, short attention span, inability to concentrate, despair, hopelessness, anxiety, weight gain). Even things I hadn’t thought of as symptoms, like excessively dry skin, intense chocolate cravings, and excessively cold hands, were gone.
There is no evidence linking the copper IUD with coper toxicity, but that’s because there haven’t been significant studies done on how long-term exposure from an IUD affects the body of the person who has it. We don’t even really know for sure why the copper is such effective contraception, though it is, and (surprise surprise) there have been more studies on the effect of the IUD on sperm than on the effect of the IUD on the body of the person who has it. But the anecdotal evidence my partner turned up in his research is abundant, and coincides almost exactly with my original symptoms.
I’ve now had the copper IUD out of my body for just over a week, and in that time I haven’t had one single “bad” day. Literally all of my symptoms have completely cleared up, after almost seven full months of almost complete incapacitation. I’m intensely relieved that I’m back to myself, but I’m also intensely angry that not only was copper toxicity not even mentioned as a potential outcome of long-term (or short-term) exposure through the IUD, but that when I specifically asked about it, I was completely dismissed. That’s seven months of my life that were lost to me, and it could have been more. And I’m so grateful that my partner believed me and refused to accept that it was “all in my head” or “just depression.” Long story short: I’m better, and recovering. From heavy metal poisoning.