Evaluating My Care Team

I mentioned recently that my care team consists solely of my psychiatrist, whom I talk to on the phone, on average, for about three minutes once a quarter. In a way, that suited me well for a long time. I was, overall, satisfied with my mental health. Besides, sometimes I feel like I spent half of my teenage years in medical offices and waiting rooms and cars going to and from them. For good reason, but it felt so freeing to not live my life around appointments that satisfied was good enough for me to not seek more help. I was burnt out of finding and seeing professionals who treated things like burnout. 

Lately, though, I’ve felt less satisfied. It’s not that my mental health has overall gotten so much worse, but I’ve hit a few speed bumps, come up with a few questions, and realized I really don’t have much of a team to keep those speed bumps from becoming more, to answer those questions. And, maybe, I’ve rested enough to recover from my therapy burnout. 

For example, I wrote recently about a mixup that resulted in me missing doses of my medication, Seroquel. I feel like since then, the road’s been a little bumpier. Is that why? What happens when you go abruptly, briefly off Seroquel and back on it? How long should you expect to be off track for? Could a different antipsychotic be better? Would another med boost my mood and energy, or help the eating disorder symptoms? I was doubting the ability of one woman to answer all of these questions for me in three minutes over the phone, over a month after the fact. 

My psychiatrist also tends to leave decisions in my hands, with sometimes minimal guidance. I appreciate her valuing my opinion and not shoving me down a path I don’t like—as dozens of psychiatrists did before her—but I’m also not the expert. The calls, by necessity, can feel very decision focused, with no room to really explore and explain options, when she’s overbooked, already late to my appointment, and I know I’m making her even later for the person after me. 

I wasn’t sure she even really knew about the eating disorder concern. I definitely didn’t want a med change based on it, until recently, when I began to consider it. (There aren’t really medications for eating disorders, even though meds are often involved in eating disorder treatment.) At times, when our phone call finally came about, I thought I’d largely left the food issues in the past. Or, I’d start to talk about it, only to feel like it got glossed over. 

Seroquel is somewhat notorious for making you gain weight—like many antipsychotics, and psychiatric medications in general—and messing with certain blood levels. After ordering routine bloodwork to check in on that, my psychiatrist asked if I’d gained any weight on Seroquel. Thinking that a good time to raise my concern I might be becoming anorexic, “No,” I said emphatically. “In fact, I’ve actually lost some weight, and I—”

“Oh, good,” said my psychiatrist, moving on, and not noting from my chart that I didn’t have much weight to lose before becoming underweight in BMI, nor seeing what I looked like. 

That was about a year—strong maybe fifteen minutes of phone call—ago now. 

Part of me just wanted to start over. Lay everything out for a fresh audience who might offer more guidance. I even reached out to a few possibilities, with no success. There was a reason I landed with my current psychiatrist and stuck with her for about seven years total—despite everything I’ve said that may sound negative, she’s the best one I’ve had. 

I’d drafted the above (which I’ve since tweaked) right before my most recent appointment with her. (Sometimes life happens too fast to blog about.) 

Our last appointment was different. I decided, in possibly a last ditch effort, to take all the time I wanted, ask all of my questions, insist on more information, and emphasize all of my concerns. My psychiatrist, getting the memo, asked to see me in person in three weeks, instead of on the phone in three months, and put me on a new, quick acting mood stabilizer to help my mood and such, which has thus far been really good. (According to the instructions, I took half a tablet for five days, a full tablet for five, then a tablet and a half—the long term dose—but I feel like it’s a bit much, making me a zombie in the mornings, and restless at other times, and while I gave it a few days like the other dosages, the best dose seemed to be in the middle, and I went back down.) I feel like I got my answers and information, but new questions that could not be answered immediately took their place. 

She was very concerned by what happened when I went off Seroquel—it sounded a lot like a manic episode to her (not surprising), but, more surprising to me, it apparently isn’t a typical withdrawal symptom. How I’d felt since, she said sounded a lot like a mixed mood episode, something I hadn’t considered, but made sense. So the new question—unexpectedly, to both of us—is if I might be somewhere on the bipolar spectrum. As I do research… it does, in a way, line up, explain a lot. But in some ways, doesn’t. There’s a very good case I’ve had depression for a long time, maybe on again, off again—though the psychologist who gave me my diagnoses made the case that all of my “depression” symptoms, including self harm and a suicide attempt, came back to anxiety. It’s the mania idea that’s newer. And we don’t have a lot of definitive symptoms to go off of right now, especially since Seroquel—which I’ve been on for years as an antipsychotic—is also, coincidentally, a mood stabilizer (just not doing quite enough for me). Psychosis, as always, complicates things. (According to some professionals, you can’t actually have both bipolar and schizophrenia—you would always be diagnosed with schizoaffective disorder, bipolar type.) 

The slightly older question to me, the food issues, she wants to address in person with a scale and bloodwork. I find it frankly unlikely I don’t have “at least” atypical anorexia right now, which is not technically a type of anorexia, but a subtype of OSFED (Other Specified Feeding and Eating Disorders), formerly EDNOS (Eating Disorder Not Otherwise Specified), because, again, the diagnostic process is just so much fun. It’s also possible, given the blurry line between atypical anorexia and anorexia (the line being whether or not you are underweight, except that the meaning of underweight is no long specified, and it is commonly observed that the same patient could be diagnosed with either one depending on the doctor), that I could be diagnosed with anorexia, being below any calculation of my ideal weight, but not at an underweight BMI. I am also aiming to recover from it, which would take it off the list, so to speak. 

So, questions left to answer.

Meanwhile, I’m also really considering trying therapy again. It’s not actually a lack of effort that’s kept me out of therapy. I bounced in and out—mostly in—therapy for the better part of ten years, seeing dozens of therapists, until just over two years ago. Finding them was hard, getting an appointment was hard. Some of them were just bad. One was a pedophile. (Didn’t touch, but immediately started asking questions about my then nonexistent sex life—given I was sixteen—after my mom left the room.) One nearly got violent. One went totally nonresponsive when important paperwork was involved. There were inpatient ultimatums and an endless stream of, “I can’t help you.” 

Finally, about eight years ago, 2015, when I was seventeen, I started seeing who ended up being my last therapist, whom we’ll call K. I got along really well with K. But she was an MFT—marriage and family therapist—who wasn’t officially qualified to treat psychosis. Even when that got officially approved, she still didn’t magically know anything more than she had before. Plus, while she was open minded, there were other elements of my life she just wasn’t well educated on, like queerness and the kink community. 

Shortly after I began seeing K, she referred me to D, a psychologist with a PhD, who could officially, finally diagnose me, which meant I could get then important paperwork, accommodations at the community college I was set to start at (an ultimately doomed endeavor). 

I saw D for diagnostic purposes, but I really liked her, too. She was much more equipped to help with psychosis, and she had a better grasp on other elements in my life. But I was still doing some good work with K. So, while unconventional, since they both worked in the same office, we came up with a plan where I’d continue seeing both of them, on alternating weeks.

Things seemed to be going pretty well for several months, but then, one day, D vanished off the face of the earth. We couldn’t get a hold of her directly; her office staff stalled, denied, ran us around, or also vanished. Even K didn’t know what was up.

Deep down, I think I knew the truth all along. But years passed—I started seeing just K, every week again, including via video chat during my ultimately brief stint in Boston. At times, I considered stopping therapy. I liked K, still, but the gaps D had filled remained empty, and overall, things seemed good.

Then Dad died. And when you’re already in therapy, and you find your father’s ten day old corpse in his house, you call in the big guns. Or, you face why you can’t call in the big guns. 

K confirmed—shocked no one had told me around the time she’d found out—D had passed away, all those years ago. She was perhaps my father’s age, brushing sixty. 

Great. Best therapist I’d ever had, dead well before I’d been seeing her for a year. 

But I continued with K, for another crucial, tumultuous year. PTSD. Increased psychosis. Probate court. Becoming a landlord. Buying a home. My grandmother’s death. Getting engaged. And, of course, the beginning of COVID—relegating us to video chat once again. I’d been off meds for about two years—taking a total break from my psychiatrist while things were good—but K encouraged me to return to her, and to go back on meds; it was, at that time, ultimately, a great call. Things improved again. 

So, for largely the same reasons I’d considered before, I stopped therapy, focusing on meds and lifestyle changes—liked I talked about in a recent post—because things were pretty good, and the elements of my life K was less educated about were becoming more and more relevant—in good ways, but hard to totally talk around in therapy.

I’ve tried, both before, with K’s help, and after stopping therapy with her, to find a new therapist, to either fill the gaps or take over. But it’s hard. My criteria are kind of demanding—all of the issues of before, plus more. I either never hear back, or get another, “I can’t help you,” or they’re just not available. And according to Psychology Today, D is still taking new patients. Hit her up. If you have a Ouija board. 

I’m trying again, though. So far, crickets. But we’ll see. 

I think even seriously thinking about therapy has helped. I want to show this new professional that I’ve done my research, looked inside myself, made the lifestyle changes, even worked on the meds, that I’m ready to go deep. I try to imagine the advice I’ll get, and act on it, the resources I’ll get, and consume them, the questions I’ll get, and answer them. I also don’t want to waste time, especially on spending months working through the obvious that any professional could give me, only to find out that we’re not compatible to deep dive together, and I need to reestablish basics again with someone new to move forward.

I’ve also made such changes and reached out to several doctors about facets of my physical health—in case some of these headaches aren’t anxiety, but needing glasses, for example—but so far, crickets, and a few of the classic, “I can’t help you.” We’ll see. 

I suppose only time will tell. 

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