Rules
I’m not much of a rebel. Most folks with OCD aren’t. I think rules are great. Rules and boundaries, like most folks who work in the helping professions will tell you, are good things. They give our social structures shape and offer the preliminary contours for our behavior. They can scaffold our learning and help us master new skills. They can often protect against abuses of power and manipulation. Our brains even make a version of rules in the form of schemas that guide and structure our perceptions, leaving us the mental room we need for automatic behavior — at the same time freeing up space for flights of fancy and more complex tasks.
My mom, a retired opera singer and choir teacher, taught at an arts magnet middle school for many years. I was a permanent substitute teacher there for a semester, right before I went off to graduate school. The school had large banners with the basic tenets of arts education printed on them hanging from the ceiling along the main hallway. One said “all art has rules.” Not rigid rules, but guiding principles of theory and form. You learn the rules and then you can break them.
But I am not enamored with psychotherapeutic and psychiatric “rules.” I used to be a big believer in the rules of psychotherapy; the rules of psychopharmaceutical medications; I was by all assessments a “compliant” patient. I took my meds, went to therapy, kept on the path of supposedly maintaining my mental health. I learned the rules. Internalized them, even: I was mentally ill. I had a disorder. I had to take care of myself and set rules to protect my internal equilibrium, to ensure my productivity and limit my distress. That I was suffering from a mental problem that creates arbitrary and inconsistent rules — and punishes my psyche mercilessly for violating them — was beside the point. Hardly anyone recognized that this was my problem, so why not just follow the rules, all of them? While you’re at it, just make some more. Rules are great.
Rules do not always account for the range of human experience. More often than not, psychiatric or psychotherapeutic rules function as limits. They are designed to keep people in their place. They are not always humane. And in the wrong hands, they can rob us of agency. Being a compliant patient means that I have to sit through humiliating conversations and diagnostic exams. I am conscious of my vulnerability as a patient in new ways this time around, and the imbalance of power prompts a good amount of anger. Part of the anger comes from having seen therapists who were not qualified to treat OCD and yet advertised their services as appropriate for the disorder. I followed their rules, but I got worse. I lost important relationships. I lost years of my life to a disorder that attacks my self-esteem and sense of self. I’m not doing that again.
Part of the anger comes from nearing 40, and just not giving a shit anymore about vague platitudes offered by talk therapists. “Trite is right,” many of them say, but what they ignore is that their trite statements are often mixed with might. Psychotherapists and psychologists and psychiatrists and licensed counselors all exercise a degree of power over their clients, who, during a mental health crisis, show up in their offices at their most vulnerable, many of us willing to try literally anything they suggest to rid us of the pain our psyches are inflicting upon us. In the case of psychiatrists, we are there because they control whether or not we can access our meds or whether or not they will prescribe the meds we would be comfortable taking. We are at their mercy, and my experience has taught me that a good number of them do not have the tools to take this responsibility seriously.
As a professor, I work closely with other people — primarily adolescents and young adults — and I can discern between a student who is stressed, one who is dealing with trauma or socialization that gets in the way of their work, one who just isn’t willing or interested in doing the academic work, or who is simply immature. I do not understand why I see so many providers who struggle to use the same skill set in a psychiatric or psychological setting. I do not understand why it takes them so long to listen to what I tell them, or why some of them don’t trust that after nearly four decades in this bodymind, I know better than anyone how mine works. Finally: I do not believe that anyone who has somehow survived a life without psychiatric or psychological intervention is more or less sane than I am. I am plenty sane, thank you very much. By now we should all know that it is a marker of sanity to ask for help. What I demand is the recognition that it is an equal marker of sanity to resist poor care.
Sane people break rules.
***
I’m currently seeing a psychiatry resident in his third year of training. This is the only person I could get in to see when I needed immediate help to try a new medication. I’ve been on the old medication for ten years but trying to go off of it during a period of stability made it stop working. My previous local psychiatrist also retired. This was the first rule I broke — trying to change my medication. When it started causing a full-body shudder alongside the restless legs syndrome (a tight, itchy feeling in the legs that requires you to move to abate it), disrupting the ability of both myself and my partner to fall asleep, I started looking at responsible ways to come off my medication. I read books about trauma, neurofeedback and psychology. I delved deeply into The Withdrawal Project pages online, looking at taper rates, consulting my GP, finding a neurofeedback practitioner who was board-certified. I bought a mini jeweler’s scale, wondering if I should grind up my tablets for a slow taper that was precisely measured. I made mathematical plans, trying to figure out how long to spend in between cuts.
At the advice of my first psychiatrist at various points over the past ten years, I had tried to lower my dose twice. Both times I had experienced discontinuation symptoms, and after just a couple days of withdrawal, I was put back on the same dose. This time around, the psychiatrist I was seeing tried to cut my dose by 50% immediately, just taking one pill every other day. It was at this point that I became non-compliant. Not only is that taper rate much too fast (no more than 10% should really be cut at a time), but I had already tried coming down much more slowly twice and had not succeeded. I contacted my GP, told her of my plan, and she supported it, being willing to take over prescribing my medication. A trained pharmacologist, she also was the only medical professional who admitted that no one actually knew how to come off psychiatric medication that had been used long-term.
But this third-year psychiatric resident tries to tell me that this body shudder that bothers me isn’t restless legs. It must be related to my Ehlers-Danlos, he insists, which can affect your autonomous nervous system. RLS is a well-known side effect of Mirtazapine. If it isn’t restless legs induced by my medication, then why does it go away when I take less of my medication? Why can I chart it based on the timing of a 7.5 mg pill? Why does kicking my legs rapidly under the blankets help? Why is me telling you about what my body feels like not enough? This is the second rule I break: feeling skeptical, rather than trusting, about my provider.
My first psychiatrist strengthened my trust in the profession. He was in his mid-to-late fifties and padded around his office in wool socks. He exuded calm and did as objective an intake as possible, simply reading off the pre-formulated (and therefore precisely formulated) questions from a clipboard. He rarely commented on what I told him, and just went through the checklist. He was helpful: he gave me a name for the odd compulsive symptoms I developed after being assaulted and stalked by my assailant. He gave me a medication — a single medication — that worked, based on what I was having trouble with at the time (eating and sleeping). He taught me how to meditate, a skill that I have carried with me into the present. And he didn’t try to therapize me. I remember being shocked when he said: “So: you’re here for a pill.” He was right. I had a therapist; I was there for a pill. He stayed in his lane and didn’t require any repeated recounting of traumatic narratives for him to do his job.
Ten years later, I’m a professor sitting in a windowless office with a psychiatry resident in a clinic built into a student dorm. I haven’t been able to get in to see a psychiatrist anywhere else — there’s a shortage of providers where I live, like there is in many places in the US. To the outside, I’m functioning fine; on the inside and in my close relationships, I’m falling apart. So I end up in this psychiatrist’s office, of my own choice. Rather than successfully getting off my medication, I am now taking two different medications. It has been very difficult to discuss what this means for my long-term treatment plan, and no one has engaged with the feelings of frustration and failure that come alongside being unable to function at my best without psychopharmaceutical intervention. Psychiatrists are also repeatedly wrong about the effects of their medications, as research has shown: only recently has the profession begun to admit that coming off medications is far more challenging than they admit and that the protocols doctors offer are much too short. Guess who first published this in a scientific journal? A psychiatric researcher taking psychiatric medications, trying to get himself off an SSRI. Lived experience was the guide for science.
The fact that I was parked on a single medication for ten years is one problem; the fact that my OCD symptoms go down a bit immediately after getting more drugs in my system is also a sign to me that this relapse was partially due to discontinuation symptoms.
No one wants to talk about that part.
***
One of the things that bothers me about this new guy is that he insists on adding diagnoses. He’s following some kind of a checklist but trying to make the items conversational. He asks the standard screening questions about mania (nope), hearing voices (nope), and suicidal thoughts (only as an escape from the terror of OCD worry; no planning). He wants to know the nature of my OCD thoughts, which are textbook examples of contamination, harm and hyperresponsibility OCD, mixed with moral scrupulosity. He puts me on a new medication, and then asks a variety of intrusive questions about my life. It’s not apparent to me at the moment that this is likely unnecessary for medication. I’ve had this diagnosis before; I’ve explained the symptoms; none of this narration was part of my other intakes.
A short while after I started the new medication, I called this psychiatrist’s office after a string of days with multiple panic attacks, wanting to know if the meds could cause them. (It is a rare side effect, but it can occur in some people.)
“You know, some people will focus in on something that’s peripheral to deal with their feelings, so, looking at the medication might be a way of avoiding your feelings.” I feel rage start to bubble up inside of me. This statement drips with pedanticism. SSRIs can cause upticks in anxiety at the beginning of treatment. When I messed up the timing of my tricyclic antidepressant in the past, I had panic attacks. I’ve also had anxiety induced by a different atypical antidepressant, Wellbutrin. Furthermore: I’ve had panic attacks after eating Hawaiian Shave Ice or drinking coffee with cake (sugar and caffeine induced). It is not irrational to ask for clarification, and I am prone to stimulant-based panic. My first psychiatrist saw how sensitive I was to minimal medication changes and joked that I was a “delicate flower.” The description was so apt that I wasn’t sure if I should consider it sexist.
On one of the early visits, this psychiatrist I now dislike wants to know if I’m depressed. Depression is both a mental illness and a symptom, and critics of the DSM-V would argue that we don’t even know if depression is an illness because there is rarely a known, observable pathogen.Thus, it is difficult to label it a disease. Sitting in this office in a dorm room, I’m in the throes of an 8-week OCD spiral. I am certainly disheartened — if you have ever experienced the extreme terror of OCD, you know what I’m talking about. The relentless overdrive of your brain creates a sense of danger and alarm for hours at a time, raising cortisol levels and heating up the part of your brain responsible for discarding irrelevant thoughts. But am I depressed?
“Look, I have been diagnosed before with major depressive disorder, but that was often by clinicians who didn’t take my OCD seriously. I don’t currently feel the kind of heaviness that I associate with feeling low. Also, the medication that I am on makes it difficult for me to wake up. I used to wake up and feel alert. On these meds it takes me a really long time to wake up, and that has been consistent with the medication over the past ten years. When I was below the therapeutic dose and trying to come off of it, that symptom went away and I was waking up with the light and I’d be alert.”
But he keeps pushing on this point of depression. And I don’t know what to tell him. If I am depressed, is that related to the severity of my OCD? What about the frustration of waking up feeling drugged for 10 years? What about stress? What about all the other nuances of feeling that may or may not be overlapping with a depressive or melancholic spectrum? If I am depressed, it’s not severe. I am deeply motivated about nearly everything in my life — but the OCD puts me on pause. The OCD creates fears that are paralyzing. The OCD tells me I shouldn’t take up space, or that I’m not a good person. OCD makes bizarre and arbitrary rules that limit my ability to just be.
Another one of these preconceived ideas he has is that I could have a personality disorder. On two separate occasions, he keeps bringing up the difference between OCD and OCPD, implying without much nuance that he suspects I could have OCPD. The key distinction between OCD and OCPD is that the symptoms of OCD are generally based upon fear and danger, are often illogical and sometimes bizarre, and as such, they cause marked distress because they are seen as incompatible with one’s sense of self. OCPD, on the other hand, is seen as consistent with one’s picture of themselves and constitutes a form of temperamental rigidity that causes difficulty in interpersonal relationships, basically because people insist that it’s their way or the highway. The caveat to this profile, as always, as it is with most psychiatric disorders, is that most people have some behaviors that overlap with the behaviors that are consistent with the profile of a disorder. The diagnosis does not become an accurate one until these qualities begin to interfere with daily life. For instance, if the perfectionism has reached a degree that people are missing deadlines at work and cannot ever turn anything in, then it qualifies as a disorder.
I do not even remotely believe that I have OCPD. Because personality issues are considered ego-syntonic, people with personality disorders rarely ask for help and they are not bothered by their behaviors. I have spent ten years trying to find adequate and appropriate help. My obsessions and compulsions cause me a great deal of agony.
What bothers me more than this psychiatric resident starting along the OCPD assessment with all of his questions are these new thoughts of jealousy about people who have escaped the indignity of psychiatric rule-making: what about the ones who don’t take medication and so are never subjected to this kind of humiliating grilling about their lives? It seems unfair that people who maybe had fewer traumas or a different socialization, who have somehow managed to keep it together; or who haven’t kept it together, but simply refuse care; who are better at holding cognitive dissonance; don’t have to subject themselves to this slow chipping away at their self-esteem just so that they can get the medication that they need to function.
He keeps going. “What about keeping stuff around that you don’t need?”
“No.”
“What about any kind of moral scrupulosity, ethical rigidity?” He again leaves out again the qualifying criteria: “not accounted for by cultural or religious identification.” I am ethically rigid on two things: sexual consent and ethical work conduct. Both of these areas, for me, although not typically recognized as a religious identification, constitute a cultural approach to my role in the world. Did I also mention I struggle with hyperresponsibility OCD?
“How are you with delegating?”
I have no problem delegating. But here is where all of these questions start to sound fishy and make me nervous. Is he going to determine that I can’t delegate because as professors and experts, we don’t always have that option? I’ve had these same fights with administrators, as have other colleagues burdened with leading programs or multi-section course coordination. We’re constantly told to delegate tasks without the understanding that as specialists, some of our tasks cannot be delegated. Why we are conducting this sort of an intake makes no sense.
“What about a sense of rigidity? Is it your way and it has to be done the right way?” The Fact Sheet on OCPD from the International OCD Foundation describes this as “shows significant rigidity and stubbornness.”
I know what you’re thinking. This story sure makes me sound stubborn.
“No. I make accommodations for people all the time.” This is especially true for family members and my students. But this is the point where I am no longer willing to make any accommodations for him. These rules are bullshit.
“It’s just that several things that we’ve talked about in here focus around control,” he says, as if that would be evidence enough for a personality disorder. If I weren’t in so much distress, I would have burst out laughing. Showing desire for control is evidence of of a personality disorder?! More than half of the country would qualify. Since I am positive I have trauma-induced OCD, let’s also talk about how traumatic experiences that are uncontrollable create a need for control. Let’s also talk about how my high-stress job profits from employees who can exert control and succeed at nearly impossible tasks. Let’s talk about how a friend of mine has to start using a wheelchair and attempts to regain control by micromanaging the things she can control at work. Let’s also circle back to the reality that OCD is a disorder that prompts the cognitive distortion that sufferers can control risk. I know that I am neither in control nor can I exert control over others. I also know that the cognitive dissonance between my brain wanting to exert control and my insight into the fact that this control is impossible is what causes distress.
He wants me to look at a CBT thought record worksheet, a cognitive guideline that is a way to separate emotional from factual content. I break another rule of compliance: I refuse to use the sheet.
“I’m not doing that. That’s contraindicated with OCD,” I say, directly. I’m already tracking compulsions, resisting the compulsions, five categories of exposures, my panic attacks and sleep hygiene. CBT exercises like this can become compulsions if you emphasize the cognitive too much. I both know my brain and have done my research. Trying to disprove my thoughts is ineffective. If I engage too much with the factual content of thoughts, they will turn into mental review, one of the compulsions I’m already tracking.
I tell him this. He seems flummoxed. I am just pissed.
What bothers me about this conversation is less that this guy might think I’m a control freak, and more that on several occasions he has not taken me seriously as the expert on my own life. I am always very clear on my intake forms what I want to be seen for: OCD kicked off by trauma. It is on this basis that I consent to treatment. Having to convince my psychiatrist that he should read my form is absurd. Seeing any sign of stubbornness or resistance as proof of psychiatric abnormality is not just disconcerting and painful to me, it’s harmful. It recreates the gaslighting of so many of my traumatic experiences and is also misogynist. I have asked for help and been hurt instead.
During the season I am at work on this book, I exchanged essays with a friend and attended several talks on campus, one on trans medicine. I learn that women, especially Black and Afro-Latina women, and trans folks are frequently subjected to this kind of pedanticism, especially in medicine. All the different life stories confirm one point. No matter what our bodies look like, we are subjected to logic that categorizes us as worthy or unworthy bodies; compliant or noncompliant patients; deserving or undeserving of care; and more often than not, we are seen as unknowledgeable about our own bodyminds and are forced to come out swinging. I take some amount of solace in this, knowing we are fighters, all of us.
This interaction with the psychiatry resident upsets me so much that I talk it over with my therapist the next time I see her. She just laughs when I tell her about this, and says, “You do not have a personality disorder. That would be apparent by now.” When I tell her his comments about control, trying to explain their context as part of an anecdote, she tells me, “That actually sounds like an example of good boundary setting that’s not rigidly black or white.” I feel relief. I tell her that he’s circled back around to this twice, and that it just keeps making me angrier, which is probably not good.
“Yeah, that’s not likely to help your case,” she says. But I also have feelings — and my biggest one right now is fear. What the hell will that guy put in my chart? What kinds of damage is my psychiatric record going to do to me?
Accurate diagnostics are important. I suffered for years while being treated either for illnesses I didn’t have or going without treatment for the one that really was affecting my life. What I have never understood while sitting in a psychiatrist’s or therapist’s office who is trying to conduct some form of positivist talk therapy is that the frustrations I feel about large areas of my life are often not pathological, but simply proof that human questions and human lives lack clear answers. That experiences often extend beyond our individual abilities to cope with them. I am never, ever ambivalent about having OCD and wanting to change this. I never deny the role trauma has played in my life. But this psych resident also wants me to tell him about my dreams and fantasies. He wants me to fulfill the myths of positive thinking and “following your passion.” I refuse. I don’t think this narrative is healthy for any of us. He counters: “Don’t you ever dream of just going off the grid and getting away from it all?”
You know what I dream of? GETTING MY OCD UNDER CONTROL. What is critical about this interaction is that if I were deeply depressed, this emphasis on dreams would simply fuel the mistaken belief and cognitive distortion many depressed people have that tells them that if they could just change that thing in their life that’s bothering them, their depression would go away. I know that wherever I go, I come along — all of me, including OCD. I do not believe in easy fixes or that I will be different under different circumstances. Accepting that is a marker of sanity, not pathology.
I’ve seen this psychiatrist four times, mostly out of desperation and a need for a new medication. On my intake forms, in our conversations, each time I see him, I insist that full-blown OCD for me is a result of trauma. He keeps wanting to do therapy with me, instead of medication management, as if my OCD specialist, herself also a trauma therapist, can’t possibly therapize well enough. He wants to look into my childhood for some evidence of early OCD. I finally resort to research, asking him if he has read any studies on trauma-induced OCD. While I am sitting in the office, he does a brief web search. I know he won’t find the articles I’m thinking of so fast, so after I leave his office, I email them to him.
The next time I come in, he has a copy of an article on his desk. I should acknowledge that at least he did his homework. He wants to talk to me about the article, asking me if I experienced any kind of self-directed revulsion after I was assaulted. I say yes, hoping that this is the end and we can talk about my meds.
“My therapist also agrees the OCD is likely trauma-induced.”
He wants to know more specifics, whether or not I’ve done trauma therapy.
“My therapist is both an OCD specialist and has a background treating trauma.”
Then he wants to know how I feel when I contemplate talking about that trauma. He has jumped into introductory trauma therapy without garnering trust or consent. I’m furious.
“Do you realize how pedantic this line of questioning is?” I blurt out.
He does that thing where he looks stunned.
“Are you mad at me for bringing it up?” he says.
This question is a way to redirect and reframe a client’s anger. I’m familiar with it as a therapeutic technique. It is also psychodynamic bullshit. I’m not mad at him for bringing it up — I have told my story enough times that I have to some degree regained control over my narrative. I’m mad at him because I’m not there for psychodynamic talk therapy and I just don’t feel like narrating a sexual assault before a 1pm work meeting. I’m mad because every time we meet, my workday is ruined. I can’t focus on writing for several hours afterwards. I never consented to discussing this narrative: I consented to being treated by being prescribed medication. He has not shown himself to be sensitive to my queerness, he has not believed what I have told him about my body, he has not believed me when I told him my OCD was trauma-related and not my constant companion throughout my whole life — until I sent him a research article from the Journal of Anxiety.
“Look, I understand you’re just doing your due diligence,” I said, “but I have had ten therapists miss that I have OCD. I had to diagnose my own OCD this time and figure out through my own research that ERP was the correct treatment. If I hadn’t done that, I’d still be stuck in talk therapy. I don’t need to narrate this for you for medication management. It is not helpful to have to go through these intakes again and again, over and over again. Can you understand that?”
The problem is, he can’t. He tries to explain that psychiatrists don’t just need to throw meds at the problem, and tells me (pedantically!) that he would have suggested ERP if I’d come to him earlier. It is the whitest, malest thing I have ever seen — discounting someone’s justified anger and insisting that you were still right. My ex discusses this exchange on text with me a couple days later.
“Why do they do that to you?” she texts.
“I don’t know. All I can hear in my head is a feminist critic who wants to punch back, IS IT TOO HARD FOR YOU TO HANDLE A WOMAN’S ANGER (or knowledge, take your pick ;-P).”
“Totally!!!” she texts, “Thwarted anger — it should be a category.”
“Look,” I say to this psychiatrist, “I’m trying to explain a feeling to you. Do you even understand that there’s a power differential here? That you have power over my chart? That I shouldn’t have to narrate my trauma to you?”
He doesn’t address these concerns, and he is so man-defensive (But I didn’t do anything wrong and you’re mad at me!) that I give up.
For the past year, the university I work at has been dealing with the fallout of one of the most egregious sexual abuse scandals in higher education. Our former president is facing two felony charges. Our provost resigned. A dean has been convicted as a sexual predator, too, and the U.S. Department of Education just levied a record fine on the university in addition to the cost of the $500 million settlement fund for survivors. Student survivors frequently railed against re-victimization at the hands of the administration in public meetings with the board of trustees last year. I was impressed by how articulate they were and how powerful they were and how young they were when they had to carry what they were carrying. But I realize suddenly that I only theoretically understood what they meant up until now. Now I understand it in my body. I’m not telling this guy anything. Telling him anything lets him feel like a therapist, which is not at all what I need from him. I am not here for him to work on. All I need are meds. For some reason, to get them, I have to tell my story even when I don’t want to, to someone I don’t trust.
“You’ve been a good advocate for yourself, but now you have new tools, like ERP,” he says.
I have heard a version of this sentence so many times that it has become a warning. The professionals who use it think that they are somehow able, with this sentence, to validate a patient’s feelings. That this will somehow create a bond of trust that allows the patient to become compliant and thus participate fully in their care. This sentence does nothing of the sort. That “but” is a danger signal. It is the marker of a patriarchal and pastoral relationship to care, in which the care provider attempts to be respected for their power or might. That by perfunctorily validating assertive behavior, that they can create an environment in which they can manipulate their client and get them to become compliant. He has broken the cardinal rule of trauma exposure: he has not given me a choice.
When I hear this sentence, it comes always at a moment where I am resisting a contraindicated modality, a method that will not work for me, or an inadequate or inaccurate assessment of the situation at hand. The precise sentence that tries to pat me on the back for my advocacy appears in moments where I am — in their eyes — inconveniently still advocating for myself. And that sentence is an attempt to relegate my self-advocacy to the past. To relegate my self-protection to the past. To take away the parts of myself that this particular doctor doesn’t want to listen to or deal with or which make them feel insecure; to limit the choice I am clearly exercising in their presence. They are saying, “So you think you know more than we do. That can’t possibly be true, so why don’t you just comply? You’ve made it to the right place.”
My own steely silence and neutral stare prompts this psychiatrist’s eventual concession. “Well, we can just talk about meds if that’s what you want. We’ll keep you on this dose if it’s working for you and you can come back in four weeks.”
He walks me back to the front office, where he says I can check out and make a next appointment. It’s full of people. I look around and wait a second. Then I break another rule: I just walk out. I’ve already made an appointment with a new psychiatrist in a different town for a month out. I go home and count my pills, making sure I have enough to tide me over, even without refills.
I have a couple extra days. Just enough to break the rules.
