#i’ve never had a doctor who actually took my chronic pain/fatigue/illness and disabilities seriously before

[acyborgkitty]

I just finished watching Jennifer Brea’s incredible documentary Unrest on Netflix. Watch it now. Everyone should. 

My story.

I became ill suddenly, and severely, in September (I think) of 2016. I had just moved to Providence in August from San Francisco, without my partner of 10+ years, to take a teaching job at Brown University. I was teaching a poetry workshop for Frequency Writers, a community writing group, as well as a class I developed for Brown’s Literary Arts department, Experimental Poets of Color. Providence is a city I love, and even though the gig was adjunct (i.e. no job security, no health insurance, etc.) I wanted to be in Providence, and I wanted to be teaching in my fiend. I had health insurance through the ACA at the time, and though I had been diagnosed with several mental illnesses many years before (major depression and general and social anxiety disorders) I felt that my hearth was well managed with the medication I was on. 

I was so happy to be back in Providence, I would walk for hours around the city, sometimes 7 miles in one stretch, listening to music and books. I was thrilled to be teaching the class I desperately wish I had been able to take at any point in my education (which includes three masters degrees), and to be nearer to my friends and family who live in Boston and the surrounding areas. I missed my partner, but we’ve been long distance for much of our relationship (the price of being an artist in academia), and it seemed like he was getting ready to leave San Francisco and head back east himself. 

It was the second meeting, I think, of the Frequency open poetry workshop. It was Wednesday night. I walked to the community gallery space on Carpenter St. where we held our meetings early, unlocked the doors, and made myself some tea. It was a normal night. At some point during the workshop I started to feel exhausted, sick, like I was getting a cold. I pushed through, but took a Lyft home. I woke up the next day and still felt bad. Worse, even. I cancelled that day’s class and stayed in bed. By the next week I still wasn’t feeling any better. I went to the CVS clinic to see if I had the flu, which was going around and apparently quite bad that year. I didn’t, I was told it was just a bad cold, and to take some cough suppressant for the bad cough. 

I thought maybe I wasn’t sleeping well - I was tired all the time - and maybe that was making the cold last longer than normal. I had had (undiagnosed) chronic pain for years which had started in 2007 in my first year in grad school. It was especially bad in my neck and lower back, so I had spent years and a lot of money finding a really good mattress. But I had housemates that were young, noisy, up late, so I invested in an eye mask, noise-cancelling headphones that I slept in, and a white noise machine. I had to teach my classes, but I would show up, teach, and come immediately back home and stay in bed until I had to teach the next class. I spent several weeks like this, thinking it was just a cold, until someone pointed out that colds, even very bad ones, don’t last for several weeks. 

I made an appointment with my primary care doctor in Boston. I’ve struggled finding doctors that take me seriously, like most women and non binary people I imagine, especially with chronic and challenging illnesses. This doctor listened to me, and was gentle, and that was pretty much all I could hope for. He examined me, and tested me for mono, strep, walking pneumonia (which I’d had before, and which was basically the closest comparable experience I had). I had none of them. Then we tested my thyroid, my B12 levels, and my immune functions. He found nothing wrong with me. 

A digression on chronic pain, including a digression on trauma.

I had gone down a diagnostic wormhole several years ago when I’d first started getting tests to see if we could find an underlying cause for my chronic pain. It started in Iowa City, where I did my second graduate degree, and included MRIs, x-rays, testing for immunological disorders, cancers, and basically anything they could think of. Eventually I was referred to a psychologist, because they determined my pain might be a physical manifestation of trauma. And I’d had my share of trauma.

A digression on trauma. I grew up with an emotionally abusive mother who, though never diagnosed, meets all of the criteria for narcissistic personality disorder. I ran away from home as a teenager, living on the streets for most of a year, before re-establishing a relationship with my family, primarily my father who helped me get an apartment, back into school, and eventually into college. At that point my mother re-entered the picture, and my father stopped helping me pay for college, so I worked sometimes as many as 5 jobs while completing my undergraduate degree. I met my partner in undergrad, and he has been an immense help for me in recovering from my trauma, but like so many who were experienced long-term abuse as children, I probably will never be un-affected by my experiences. 

So the trauma angle seemed at least plausible to me, and I went to a year’s worth of sessions with two different people, one a psychologist who specialized in and studied the manifestation of trauma as physical pain, and another who practiced CBT and meditative mindfulness therapy. Both helped immensely with my emotional state, but my pain persisted. So when I moved away for my third graduate degree (my first move to Providence) I transferred care and we started the diagnostics all over again. This time I saved all my records - I have my MRIs and my X-rays still in some box somewhere. We did CAT scans and I went to scores of specialists including  an orthopedic surgeon who recommended surgery; a chiropractor who works with the Boston Ballet Company who diagnosed me as hyper-flexible and gave me strengthening exercises to do that actually seemed to help somewhat; and a neurologist who found nothing wrong with me at all. After four years of referrals and diagnostics, I found a integrative care physician who listened to me break down in her office, prescribed an anti-depressant that is also a sedative to help me fall asleep, and helped me come up with a plan to manage the pain. Massage, chiropractor, walking and stretching, the anti-depressants, 800mg Ibuprofen when I needed it, and Vicodin when nothing else helped. 

After all of this, I wasn’t eager to go down another diagnostic chase. 

Back to 2016.

By this point it was the middle of November. I was so sick that I couldn’t feed myself, I couldn’t do laundry, I couldn’t leave the house except for to teach, and then I spent the next 24-48 hours recovering mostly in bed from the fatigue it caused me. I was experiencing sever cognitive deficiencies, most notably my ability to process and retain information, and my ability to speak. It felt like I had dementia, or what I imagine dementia to feel like. I would read the same sentence over and over again and not understand it, or not remember it when I started the next one. I would fight to get up to go into the kitchen, only to forget what I was there for. Did I need water? Had I fed the cat? Did I need to use the bathroom? My father and brother were taking turns coming down to my house to prepare food for me for the week, and to get my groceries, and to do my laundry. I needed help with everything. I could do one, maybe two things in a given day. Those things included brushing my teeth and feeding the cat. 

I couldn’t even research my condition, given my cognitive symptoms. I was angry, and many days I felt like it would be better to die. I couldn’t read or write, so I took up embroidery as a way to try to keep my life worth living, a way to keep making art. 

In January, 2017 when my partner came to visit for his winter break, we went to my doctor together. I couldn’t remember the questions he wanted me to ask, and I couldn’t have remembered the answers anyway, and I certainly couldn’t get myself there and back without help, so him coming was the only way I was going to get there. I don’t remember much of the appointment, but I do remember my doctor suggested that I might be experiencing a severe prolonged depressive episode. Based on my previous diagnosis of depression. Based on the fact that there seemed to be nothing wrong with me, physically. 

My partner didn’t buy it. I sort of did, or at least I didn’t have the energy to dispute it. My partner started researching, aggressively, and a few months later he came up with something. Maybe, he said, it was my copper IUD. Maybe I had copper toxicity. My doctor said that was impossible, that the IUD can’t cause copper toxicity, but my symptoms aligned, and there are thousands of women on the internet who have experienced copper poisoning from their IUD. So one day in April, my best friend took me to the hospital and I had mine removed. The next day, I felt better. Not 100% better, but maybe 40% better. The next day my partner and I went for a walk, the first time in almost a year I had felt able to do that. 

I kept feeling better. Not getting better, but I stayed feeling about 40% better. A few days I felt almost entirely myself, but then the next day I would be exhausted again. I could do things, but if I pushed too hard, I would collapse and pay for it for days. I learned about spoons, and disability culture and activism. I learned about setting my limits, and prioritizing. I said no to almost everything, because almost nothing was worth the risk of incapacitation for me. 

My brain started to recover too - I could read. I started writing in my journal, not poetry but at least writing of some sort. I felt hopeful that I was recovering. We bought a house, a big old Victorian that needs TLC, and I moved in there with 4 other queer artist friends. I didn’t get the tenure-track job at Brown, but I did get another adjunct offer to teach Book Arts, and I accepted - something I definitely couldn’t have done at my sickest, given that it’s a 15-hr a week studio course. 

But now, a year post-removal, my memory is still a problem. And I still get exhausted a lot. A lot more than I used to, before I got sick. But the anecdotal evidence on the copper IUD detox forums says that it could take years to fully process the toxicity out of your system. The most severe days might be attributed to “dumps” - when the body releases stored copper all at once - and those days feel like my worst ones did when I was at my sickest. I had thought that when I felt better, I would start to do things again, go to poetry readings, have dinner with friends, go for walks, be part of the community I’d moved here because I loved. But I still say no to most things, or write them down in my calendar and don’t go. I know that if I push too hard, I’ll pay for it for days. And “too hard” is a moving target - it changes seemingly randomly, and I don’t know when I’m approaching it until it’s too late. Then I’m in bed for days. 

I’ve been having an especially bad few days. Maybe a week. Maybe more. My memory, my brain isn’t good at sequence anymore, or keeping track of time. It’s frustrating, because I can’t keep track of my own symptoms. Sometimes I remember to write them down, and sometimes I forget, or am too tired. And there’s no one here to watch me, or help me - my partner doesn’t move here until June. Today, for example, I got up at 11 and I fed the cats. And I was so tired that I lay down, and just...passed out. I don’t remember falling back asleep, but then I woke up at 6 pm. I fed the cats again, and then had to go back to bed. The last week has been similar: do just what is necessary, then back to bed. It feels like I’m sick all over again. 

I have had my period, which can be associated with copper dumps. I’m not saying it’s not copper “dumps,” or that it’s isn’t related to copper poisoning. But I watched Unrest and thought: “maybe this is what I have, too?” So many of those scenes were heartbreakingly familiar. I wept through most of it, because Jennifer was saying the things that I’d been feeling. About feeling like it was a good day when all I had done was survived it. About feeling like my life had ended, and that I had a new one now, one that sometimes didn’t feel like a life at all, but one that I still didn’t want to give up. About not being listened to, about not being believed. I wept at the thought of having a diagnosis, after all this time. Of maybe finally at least knowing what is wrong with me. Maybe.

But I don’t know how to find out. I don’t currently have health insurance, because the premium on my ACA policy from last year went up by 50% and I couldn’t afford it anymore, and adjuncts at Brown who teach fewer than 4 classes a year don’t get health insurance, and I’m only teaching 3, and I am barely able to do that; this semester teaching 2 classes took every bit of energy I had. I will get health insurance starting in September when my partner starts his new job in Providence, and maybe then I can get some answers. If I have the energy for it.

My story doesn’t have an ending yet. I’m in bed, as I have been all day. Writing this was the most writing I’ve done since I got sick. I’m grateful for that. It feels like, thanks to the work that Jennifer has done, an important story is at least starting to be told. Not just mine, but one that is shared by millions.