This post contains a recent thread of correspondence between me and my psychiatrist, who is currently treating me for PTSD. In it, I discuss medical trauma, trauma from involuntary hospitalization, trauma from disordered eating and food insecurity, trauma from fatphobia and fat-shaming, and trauma from child abuse, rejection, and social isolation for having visible signs of autism and ADHD.
Letter from me to him
Dear Dr. REDACTED,
I’m writing this to bring my concerns to you regarding the health of our professional relationship. I have a great deal of difficulty in voicing these concerns during our appointments, due to a combination of reasons, the most serious of which is that I feel unable to trust you with regard to hearing my concerns and showing understanding for my perspective. For well over a year now, each time we have an appointment, I agonize over the preceding week about which issues I wish to tackle in the upcoming appointment and rehearsing to myself how I will bring them up and advocate for myself, and then I agonize over the following week about the ways in which I failed myself. And then I find myself frustrated by the fact that I have no realistic recourse, because you are one of the least bad medical professionals I’ve worked with and I have no realistic hope of finding one who actually respects my concerns. This letter is the last step before I give up on seeking professional help with you for any issues except the PTSD that you and I already agree that I have.
The first of four issues that I wish to mention here is the negative impact that my involuntary hospitalization in fall of 2019 had on me. I contacted you while I felt suicidal because I had been meaning to contact you at the time, as I felt that my medication was no longer effective, although I was unable to communicate this at the time because of my distress. I now recognize that the reason the medication was “failing” me was that my actual problem was a degree of job stress at Fitbit that was killing me, and there is no medication for that; the only cure was to quit the job and find a less stressful means of employment. What I needed at the time was someone to talk to, to tell me that the demands my manager was making of me were unreasonable and that my working environment had become abusive. Instead, you contacted the Oakland police – a choice which I agreed to because I naïvely believed that they would send someone who would talk to me. They proceeded to place me under a 5150 order and lock me up in John George Psychiatric Hospital, a facility better described as a people warehouse than as a medical facility. This would have been acceptable, but approximately 36 hours into my hold, at approximately midnight, a staff member advised me that John George was an emergency facility and that there was an opening at a non-emergency facility, and that my insurance would most likely be less reluctant to cover “treatment” at such a facility. I agreed to the transfer, which happened immediately in the dead of night. I then arrived at San Jose Behavioral Health Hospital. While this facility was more pleasant on the surface, I quickly discovered that there was effectively no mental health treatment occurring at this facility either. I was content to wait out my 72 hour hold in peace, however.
This belief that I would be released after 72 hours proved to be false, however. The 72 hour mark came and went, and when I expressed concern I found that my 5150 had been extended to add an additional 14 days to my hold (via a 5250) without my knowledge. The explanation given was that the new facility had not seen enough of my behavior to know if I was still a danger to myself, but (1) the law requires that the professional staff affirmatively find that I am still a danger to myself, not merely that they “aren’t sure”, and (2) the law requires that I have been advised of the need for voluntary treatment and refused it, which I had not. I did not know this at the time. At this point, I panicked. I had no way to tell my manager where I was, so I would surely be let go as a case of resignation via job abandonment. No one would be home to take care of my cats, who would run out of food and water because I had only prepared for a 3 day absence. As financial stress was one of the biggest things on my mind at the time, and my cats were literally my only reason for living at the time that I contacted you, the distress that I felt was, I hope, very understandable to you.
I asked what conditions I needed to meet to release the hold. I was told that the staff psychiatrist and the staff social worker needed to meet with one another and mutually agree that I was fit to be released. The problem: there was only one day each week when both were scheduled to come in. I would have to wait until at least 7 days into the hold before it was even possible that they would consider releasing me.
Fortunately for me, the weekly visit of a judge for 5250 certification review hearings was on Tuesday, which was roughly 5 days into my total hold. I explained to the judge that I was no longer suicidal and that I had received no individual treatment whatsoever and only mediocre group therapy on par with a primary school classroom, which was a less intensive treatment regimen than my weekly outpatient therapy sessions. I was released against medical advice later in the day.
I still have nightmares about San Jose Behavioral Health. The experience of being confined with no idea how long the confinement would last, with the terms controlled by capricious authorities who didn’t care about my mental well-being, added new layers to my existing childhood trauma about abusive adults in my life. I strongly believe that San Jose Behavioral Health has enacted policies to facilitate insurance fraud, and that my experiences there were largely a result of their fraud upon my insurance company.
What I hope to hear from you is an unequivocal rejection of the ethical propriety of what happened to me, and an acknowledgement that, had you known what would result, you would have taken a different action.
The second of the four issues that I wish to mention is your past insensitivity toward my experiences with obesity and attempted weight loss, a very significant and life-long source of trauma for me. I struggled with my weight as a child, and was bullied quite a lot because of it. At age 10 I joined my mother in following the Richard Simmons Deal-A-Meal plan and exercising with her to Richard Simmons Sweatin’ To The Oldies. As an adult I have lost weight from 270 pounds to 240, and then from 320 pounds to 270, and then from 400 pounds to 300. Each time I have lost weight, it has rebounded to set a new lifetime peak. Around 2011 to 2013, the period over which I lost 50 pounds to reach 270, I was exercising 10 hours per week – 1 hour of cardio per weekday plus 1 hour of weightlifting per weekday – but was unable to lose any further weight despite 6 months of continued working out and sensible eating. Desperate to lose more weight, I started to starve myself. My mood became irritable, I had headaches and brain fog all day long, I felt weak and stumbled after each workout. And yet, I still never lost even one additional pound.
This comes after a life with a very distressing relationship with food. As a small child I had a very sensitive palate, unable to eat many common foods without retching or vomiting: meatloaf, meat casseroles, gravy. I was yelled at by my parents and forced to go to bed hungry when I couldn’t eat what was offered. After my parents divorced and my father remarried, my sister and I experienced severe food insecurity when we visited our father’s house because we were left alone all weekend and no one would provide meals for us. We had to find food for ourselves in the kitchen, but we would be yelled at or punished if we ate food that was “not for us”… but which foods were “not for us” was never explained, so we were forced to subsist entirely on instant ramen for fear of upsetting anyone. (I was once severely reprimanded for drinking a glass of milk.)
This childhood relationship with food was further complicated by my period of homelessness from 2000 to 2003. I was suffering heavily from undiagnosed PTSD, but no one wanted to help me seek mental health treatment because no one believed that I was mentally ill. They mostly thought I was “lazy”. I couch-surfed with relatives for as long as they would put up with me, but I went through five “homes” over that 3 year period, and the only money I had was the $50 per week that my mother gave me out of pity. Without access to a kitchen of my own, $50 per week was not able to buy much food. Sometimes I make light of my trauma by calling that period of my life the “bean burrito diet”, as I subsisted almost entirely on $0.90 fast-food bean and cheese burritos, with the occasional tacoburger to add some protein (after I noticed strange muscle cramping and heart palpitations from going without meat for six months).
My relationship with exercise is no less fraught. I have asthma that went undiagnosed throughout my childhood, which prevented me from participating or succeeding in many physical activities, particularly aerobic / cardiovascular activities. I also participated in taekwondo from age 13 to age 16 alongside my sister, an activity which left both of us with severely damaged hip, knee, and ankle joints due to medically incompetent instructors who encouraged bad form and sharp snapping motions in our kicks. Largely because of my taekwondo participation as a teenager, I suffer from constant, low-grade joint pain 24 hours a day, which intensifies to very limiting acute joint pain during certain physical activities. I have unusually high mobility in certain stretch poses and unusually low mobility in others due to the joint damage.
I now know through reading the medical literature that:
Adult obesity is strongly associated with childhood trauma (multiple ACEs results in a 46% increase in the chance of obesity)
Evidence is clear that cortisol stimulates the release of ghrelin
Evidence is suggestive that cortisol stimulates the release of leptin
Evidence is clear that there is a strong relationship between increased cortisol levels and adipocyte behavioral changes suggestive of increased metabolic syndrome
Evidence is clear that chronic elevated cortisol causes severe dysregulation of the immune system, including elevation of the innate immune system and suppression of the adaptive immune system
Evidence is clear that there is a link between stress and thermoregulation (cf psychogenic fever), likely mediated through metabolic changes in brown adipose tissue
- This is primarily associated with acute stress causing an increase in core temperature, but evidence is as yet unclear whether or not there is a link between chronic stress and core temperature in either direction
Evidence is suggestive that mean body temperature of males has decreased by 0.59⁰C since 1980, and of females by 0.32⁰C over the same time frame.
- Notably, 1980 was the approximate start of the “obesity epidemic” in the US.
- Also notably but much more speculatively, 1980 was the start of economic policies in the US that caused the growth of gross economic productivity to sharply diverge from growth in real wages, which increased economic stress on American households.
- On a personal note, my normal “healthy” body temperature since childhood has always been around 97.5⁰F, no matter how much exercise I have been getting.
What I hope to hear from you on this issue is an acknowledgement that my weight, my exercise regimen, and other matters relating to my physical capabilities are a matter between me and my primary care physician, who is literally the only medical professional I’ve ever worked with who has respected my experiences and limitations.
The third of the four issues which have been weighing on me is your dismissal of the possibility of an autism spectrum disorder diagnosis. My therapist and I are in strong agreement that I clearly show a large number of autistic traits, even if they take a form that is more typical of autism in women than of autism in men. My belief is that this is because my father and my stepfather both varied from neglectful to actively abusive in my childhood, leaving my mother as my sole responsible adult to use as a role model.
I previously mentioned bullying due to my childhood obesity. What I did not mention was that this was only a small fraction of the bullying that I received as a child, and that the vast majority of it was due to my inability to “fit in” with my peers and to understand social cues. The version of me that you see today is the version of me that has spent a lifetime trying to compile scripts, rules, and tricks to “pass” as normal and stop the bullying I received from childhood peers, school teachers, and both male parental figures. As a small child my father ruthlessly made fun of my naiveté and supposed stupidity, to the degree that his nickname for me was “shithead”. My 8th grade algebra teacher, who I mostly liked, once showed my correct but unconventional proof of a statement as an example of why I was a “genius from Mars”. My experience of math class from 4th grade through high school graduation was that of a continuous struggle with my teachers to understand which steps in solving a problem were required to be written down to “show work”, which frequently resulted in them docking points from my homework.
My childhood obsession from before I could even speak was electronic circuitry. My first word was “hot” because my mom was trying to teach me why it was dangerous to stick screwdrivers into electrical sockets. I built my first electric circuit (battery, switch, light bulb) before I was in kindergarten and could explain why it worked. My favorite store was Radio Shack. My childhood toys were 100-in-1 electronic project kits and science encyclopedias. In 7th grade I was excused from gym class because of stress-induced nausea from bullying, and I was placed into an “independent study” hour which I spent reading and re-reading through a 1,000 page textbook on analog RF circuit design (my first exposure to fλ = c, the relationship between frequency and wavelength in electromagnetic waves and therefore my first glimpse of Special Relativity). I took the textbook with me when we went on a family vacation to the Ozarks, and spent the entire trip in the cabin reading from it. In 10th grade I started to design my first microprocessor core.
At no point between kindergarten and high school graduation did I have more than 3 school friends at a time, and counting neighborhood friends I never had more than 4. Most of them were equally socially inept. We sat together at lunch in high school, but if they weren’t there I would circle the cafeteria looking for an empty table by myself to eat my lunch, as I felt deeply uncomfortable asking anyone who I didn’t know if I could sit with them, and many of the tables were off-limits because I was a social pariah at them. Several times, no such table became available over the course of the lunch hour, so after walking the circuit around the cafeteria for 50 minutes I would eat my lunch off my cafeteria tray while standing, trying to eat it all quickly before the hour was over.
While I recognize that my presentation is atypical, I have been carefully considering the evidence that I am autistic since 2003. I am not an expert in psychiatry, but like any patient I am the world’s only expert on my own body, my own mind, and my own lived experiences. There are two reasons why I am interested in obtaining an autism diagnosis.
First, an autism diagnosis means the possibility of asking for ADA accomodations at work. Past work environments have caused me to have autistic meltdowns, and if you are not familiar with how autistic meltdowns feel from the inside, they are about as mentally draining and long-lasting as a severe migraine episode with a multi-day recovery period. These have previously threatened my job security at Google and at Fitbit.
Second, an autism diagnosis would be extremely validating. This may sound comparatively trivial, but it is actually more important than the first. I spent my childhood believing that I was a bad, defective person and that it was my fault for not understanding what was going on around me or happening to me. My one and only period of suicide ideation strong enough to result in actually forming a plan and taking steps to execute it took place in 1999 during my freshman year of college, and the driving force behind it was my belief that I was a worthless, defective human being who was just taking up space and resources that somebody else deserved more. This was compounded by the fact that I was only able to attend college due to scholarships, and my extraordinarily poor college GPA convinced me that I had “stolen” that scholarship money from someone more deserving. Knowing that it wasn’t just a matter of “laziness” or “stupidity” or “being weak-willed” or “not paying attention” or “throwing tantrums” (as a child) or “getting mad for no reason” (as an adult) would help me to put to bed some of the deepest, longest-lasting trauma of my life.
What I hope to hear from you is an acknowledgement that my beliefs and conclusions on this matter are reasonable, and if you continue to disagree with them while calling them reasonable, a clear explanation of what traits you do not see in me that you would expect from an autistic patient.
The fourth and final issue that I want to bring up is ADHD. While I have zero regrets about stopping Latuda, it has surfaced some ADHD traits that had been temporarily suppressed by my poor mood, while others have been ongoing my entire life.
First and foremost is that, when I am in a good mood and feeling energized and relaxed, ideas flash through my head faster than I can write them down or even acknowledge them enough to remember them later. I have recently come to learn that this situation is called “racing thoughts”, although unlike racing thoughts from non-ADHD sources, these thoughts are not anxious or unpleasant and I do not want to be rid of them. I only want them to slow down enough that I can remember them for later, and I want them to stop happening at 1am when I am trying to fall asleep. Self-medicating with caffeine is the most effective way I have found to control these and fall asleep; accordingly, I have started drinking coffee each night around 8pm to help me get to sleep.
Second is undesired hyperfocus and the consequent disruption to time management. I frequently start new personal projects without ever finishing old ones, because I get distracted on some new specific issue or problem and hyperfocus on it before I have finished addressing the previous issue. A partial list of projects that I have “cooking” on my mental “stove” includes:
Complete my novel-length fanfiction titled “Secrets”, which is currently sitting at 36k words out of an estimated 60k
Complete my short fanfiction titled “Choices”, which is currently sitting at 9k words out of an estimated 12k
Write my first non-fanfiction work, a sci-fi novel tentatively titled “A Panoply Of Stars”, which I have been mentally outlining since 2016 but is almost ready for a first draft
Write my second non-fanfiction work, an anthology of short stories titled “Postcards From The Late Anthropocene”, which heavily features a series of short stories about a world-changing event involving virally infectious human memories (marking the beginning of a new geological/ecological era of Earth, the “mnemocene” as a pun on “Mnemosyne” with “-cene” by analogy with the existing “anthropocene”)
Finish writing my essay “Human Morality and AI”, which we previously discussed
- Code a series of Game Theory simulations to prove my arguments in the essay
- Code an actual primitive artificial general intelligence based on these precepts
- Write a whitepaper presenting my artificial general intelligence model to the world
Finish writing my collection of non-fiction essays (currently a mix of drafts and mental notes) on my political beliefs
- Includes a lengthy essay about how the concepts introduced in the Enlightenment (most specifically: “natural rights”) contains internal contradictions, how Romanticism was a reaction to it (in the “reactionary” sense), how fascism is the fulfillment of Romanticism that exploits the contradictions inherent to the Enlightenment, and how moving forward requires discarding both movements in favor of a reframing of “rights” instead as “moral obligations”
Figure out how to best advocate for the adoption of a national Universal Basic Income
Figure out how to best advocate for the wholesale replacement of plurality voting with range/score voting
Run for office
Finish coding my frontend reverse proxy, “Roxy”
Code my own blogging platform from scratch that does what I want
Code my own web forum platform from scratch that does what I want
Code my replacement for YouTube (“Listen Together”) and found a user-owned co-op corporation to govern it
- Need to research laws on co-ops, both worker-owned and user-owned (the latter is a very new concept legally)
Code a distributed filesystem with POSIX semantics (distributed ZFS)
Code my own WebDAV, CalDAV, and CardDAV implementations that do what I want
Additional coding projects at work that I want to get to but are not listed here, as they would require too much background to explain
I spent much of each day in a state of mild distress because, whatever I am focusing on, I feel like I am focusing on the wrong thing and I can’t decide which items have priority. Worse, I spend most of every day on Twitter scrolling through my newsfeed because I am obsessed with accumulating information. Before Twitter it was Tumblr, before Tumblr it was news websites and blogs. This has been ongoing since the year 2000, when I was homeless and spending most of my day at the office of my grandpa’s heating and air conditioning business.
What I hope to hear from you is an acknowledgement that most people, even people of my intelligence, do not experience these symptoms, and guidance on what I can do about them (if anything).
In conclusion, I hope that we can rebuild trust and salvage our professional relationship. As I said at the start, despite these problems and despite my pre-existing medical trauma from past experiences with neglect and condescension from nearly every other doctor I have ever seen, our relationship is one of the least bad I have ever had, and it would be very upsetting for me to have to curtail it to a minimum as a necessary measure of self-protection. I like you, and I want to continue to work with you, but my needs are not being met and it is clear that they will continue to go unmet unless I advocate more loudly for myself.
Response 1: him to me
Very well articulated points and I think this reply is probably not to the level of specificity you probably desire on these issues because I feel they would best be discussed during an appointment where we can have a back-and-forth conversation. Firstly, I appreciate your kind words and your tact in addressing these issues which have been a source of continued frustration, as you’ve brought it up to me multiple times and I believe we’ve gone through discussions that address why or how one would make a diagnoses. I apologize if perhaps I may have sounded in any way dismissive or you felt less-than-heard or not validated. Your concerns are very real to me and I’ve grown to appreciate our therapeutic connection, and always strive for treating my patients with professionalism and respect.
To address your points:
(1) Hospitalization - It’s a bit difficult to answer because I do feel that I did my ethical duty to have the police come and evaluate you and have you taken to the emergency psychiatric unit. This is part of the standard-of-care within an outpatient practice and is in-line with what other psychiatrists may have done. Additionally, there was a trusted therapist by my side who also agreed with my decision making in that moment. Of course, I wish that you had a better experience in the hospital setting and that they treated your rights with more care. I do sincerely apologize that the medical system let you down in that regard, and had I known the things that you told me afterward, I think we could have tried to discover an alternative solution. That being said, in emergency situations, the decision making often ends up happening fairly quickly and because of that, hindsight can often be a better guide for future care; i.e. should something similar come up in the future, you and I could chart a path for care that makes you feel more comfortable and also gives you the level of mental health care that is considered appropriate from a medical decision making standpoint.
(2) Obesity/general health - All of the medical/scientific points you made with regard to obesity, bodily health and the interplay between these and mental health are entirely valid. Kudos for you on always doing a great deal of research. That having been said, I’m a medical doctor first and foremost, followed by psychiatrist, which is why I often bring up general medical issues in most of my appointments with patients. In the “biopsychosocial model” of holistic patient care, we look at biological/medical, in addition to the psychological and social aspects of one’s mental health. Obesity is often associated with depression and a variety of other health conditions that can impact mental health (e.g. sleep apnea, diabetes, etc.). That having been said, if you felt that these are being adequately addressed by your primary care physician, I can stop discussing these during our sessions, with the aim of providing you with a comfortable environment to discuss other pressing matters that you feel are more important in addressing your mental health.
(3 & 4) Autism and ADHD - Again, so many of your points are very valid and I do sincerely hear you when you explain each of these. For autism, the areas that are most convincing for why you don’t have this diagnosis is our interactions during the session itself – you’ve always been very good at maintaining eye contact (again might be misinterpreted because of the video format), having good back-and-forth conversational style with me, have seemed engaged and interested in a wide variety of subjects, you’ve often shown an interest in engaging me as well, you’ve been able to navigate complexities of interpersonal communication styles (e.g. jokes, sarcasm). For the ADHD diagnosis, it’s often hard to tell in an adult where the deficits may lie, but I would rely on your neuropsychological testing assessment, which was indicative of normal attention capability. When I spoke with Dr. REDACTED [a neuropsychiatrist], she did say that you could seek out a second opinion and this may help clarify things or give a contrasting viewpoint. Perhaps another evaluator might be able to pick up on things that are more subtle or via different testing modalities.
Finally, I do thank you for your email and I always hope that you and I can strive to develop a therapeutic relationship that is trusting and open. I again apologize if I haven’t been able to create that environment where you felt that was the case. However, one thing I do see as a positive is your candor in sending me this message and being honest in your concerns. That is always a good thing and something I hope all my patients feel comfortable in doing. So, the fact that you did already makes me feel like we have a strong therapeutic alliance.
Take care and please feel free to bring notes with you to our next session. I want them to be as fruitful as your desire.
Response 2: me to him
Unfortunately, it seems I have not made my point understood. This letter describes four different ways in which your actions have traumatized or re-traumatized me, resulting in an iatrogenic worsening of my PTSD symptoms that me and my therapist have been repeatedly forced to unpack and heal after-the-fact.
(1) Hospitalization. My experience is far from unique or unusual. After my hospitalization I sought out first person accounts of others who had experienced involuntary hospitalization due to suicidal thoughts, and none of them believed that they had been psychiatrically or therapeutically helped in any way by their hospitalization. Many had instead been further traumatized, making them more suicidal but now afraid to reach out and tell anyone. The one thing that I needed most, someone to talk to about why I had felt suicidal, I never got in 5 days of hospitalization. I left the hospital in a worse mental state than I was in when I was sent there. All it did was reinforce that, if I ever feel suicidal again, I absolutely must not disclose it to you.
(2) Obesity. Again, this is a matter of psychological trauma for me, and you have repeatedly disrespected the fact that I was getting upset by your lectures to me. For each one such discussion, multiple therapy sessions devoted to processing my feelings and undoing the damage you inflicted were required.
(3) Autism. I told you in my letter, fairly clearly, that I have been practicing all my life to hide my autism to protect myself. I DO NOT FEEL SAFE BEING MYSELF IN FRONT OF YOU. I fake eye contact by looking at your mouth, a trick I learned in high school and have used with everyone I interact with ever since. I mirror your emotional state in our conversations, overshadowing my own and leaving me unable to express myself verbally. You are not talking to me in our sessions, you are talking to the mask which I have crafted to survive in a world of people who hate autism. I do not bring these things up in a face-to-face session because (a) when I am masking I am unable to access memories from emotional states that do not fit the mask, and since the mask mirrors your emotional state and you are usually pleasant and cheerful, I can only remember the things in my life that are pleasant and cheerful; and (b) 30 minutes is not enough time for me to articulate myself and my emotions, because I have very intense alexithymia that requires methodically examining the various parts of my body and deducing which emotions they are associated with, a slow and halting process that means that my natural, un-masked conversational speed is slow and halting with frequent pauses of a minute or more. I was forced to build and wear this mask because my natural self is an extremely emotionally sensitive person who cries at the slightest provocation, and my father ridiculed me and my stepfather screamed at me for it.
(4) ADHD. I am still resentful, even scornful, of Dr REDACTED [the same neuropsychiatrist] for (a) offhandedly dismissing all the work I’ve put into into understanding and processing my PTSD just because I hadn’t yet tried the therapy modality which she preferred, and (b) attributing my symptoms to PTSD, when in many cases the arrow of causality is clearly reversed, i.e. ADHD symptoms caused bullying caused trauma. Most memorably, I recall my stepfather screaming at me for being unable to memorize my multiplication tables in fourth grade. I also recall multiple occasions on which I forgot my backpack with my homework in it at school, and my stepfather proceeded to emotionally and psychologically abuse me – the worst such occasion being when he forced me to walk back to school, get my backpack, and walk home (a 1 mile distance) while trailing behind me in his car screaming abuse at me through the rolled down window to “make sure” I actually went back to the school. My current memory abilities are the direct result of my attempts to protect myself from his abuse and his gaslighting, as I developed tricks and mnemonics to store memories with spatial associations, to the extent that I now use proprioceptive synaesthesia to store, manipulate, and link memories on a virtual “poster board” that feels like it physically floats about 2 feet in front of my face.
Response 3: him to me
Can we schedule a 1 hr discussion to go over everything in the level of detail you feel comfortable? As to all of your points, again, I see where you are making very valid arguments in support of each one. Rather than having emails back and forth, which may not adequately communicate my thoughts or high regard for you, we can perhaps have a longer conversation?
As for the ADHD and Autism diagnoses, do you think it would be helpful to have a referral to another neuropsychologist? There are several I can recommend but they are all in the South Bay area. However, we can perhaps get some testing done through a clinic like UCSF psychiatry department, which would guarantee that you have several sets of eyes on you (psychology trainees/supervisors, psychiatric trainees/supervisors). Just a thought.
Shall I have my staff contact you to book the follow up?
Response 4: me to him
Yes, I’d be happy to schedule a longer discussion. As for a referral, I think at this point I would rather look into recommendations from the adult autistic community because many have reported painful, even infantilizing experiences with doctors who claim expertise in autism.
Additional short letter: me to him
I’m sorry to bother you again, but I haven’t been able to sleep since yesterday because of anxiety and my IBS has been violently activated (to the detriment of at least one pair of underwear already), and I don’t think I’ll be able to return to normal until I talk about this.
I’m terrified of doctors because of how I’ve been treated in the past, and how others I care about have been treated. Unfortunately, I’ve discussed it with my therapist and we’ve concluded that it’s a rational fear.
Just a few days ago, I saw someone tweet that their obese father went to the doctor due to unexplained, sudden weight loss. The doctor congratulated him. He went back three more times over multiple years, still continuing to lose weight, and it wasn’t until the fourth visit that he was finally diagnosed with renal cancer. It had reached stage four, and he died only 10 weeks after the diagnosis.
Just today, I saw a tweet from someone who went to see an allergist, and the allergist told her that she didn’t need a cane because she was only in her early 40s. She has Ehlers-Danlos Syndrome and has dislocated her hips repeatedly since childhood.
I’ve seen so many women with endometriosis tell horror stories about how they were incapacitated by pain and bleeding over a liter of blood each month, but when they begged for hysterectomies they were told that the doctor wouldn’t do that without the husband’s permission. Or that, if they were single, they wouldn’t take away the possibility of children from their future husband. Or that, if they were lesbians and committed to going child-free, that they might change their minds and use a sperm donor.
I’ve heard far, far too many women tell horror stories of the “husband stitch”: after their ob/gyn performed an episiotomy during childbirth, the doctor added one extra stitch “for daddy” to make their vaginal openings tighter, even though it caused tearing and made sex unbearably painful for the rest of their lives.
Serena Williams, the famous tennis player, had to beg medical staff for a CT scan and heparin because she could feel blood clots in her legs after the birth of her daughter. The doctors thought she was delusional from the pain meds, and the only reason she didn’t die was her persistence.
My own mother was having problems with becoming quickly fatigued after walking only a short distance, and was no longer able to exercise. For years, doctors blamed it on her obesity. “Go home and lose weight.” By the time her hypothyroidism was diagnosed, she was only a year or two from death without synthroid.
My ex REDACTED had severe abdominal pain whenever he ate fatty food. For 20 years his doctor blamed it on his obesity. “Go home and lose weight.” Two years ago, he finally convinced his doctor to run a scan, not sure if it was ultrasound or CT, and they found gallstones. He went to a surgeon, but the surgeon blamed it on something else and refused to operate. This last year, he tried again with a different surgeon and finally got his gallbladder removed. It was grossly abnormal because of the multiple large stones inside that were blocking his bile ducts, and he’s lucky that it didn’t rupture.
When I was 16 I used a non-anal-safe vibrator and got it firmly lodged in my rectum. I had to have surgery where they split my abdomen open from navel to groin to cut open my colon and fish it out. When I went to my family doctor to have the stitches removed, he questioned my sexual activity and gave me a lecture about AIDS. The only person I had ever had fluid contact with was my stepfather, when he had raped me, but I didn’t feel safe telling him that.
When I was 22 I went to a therapist associated with Catholic Charities. He tried to blame my homosexuality on bad parenting by way of outdated Freudian theories. I didn’t feel safe telling him about the rape, so I never got diagnosed with PTSD. I was told I had “social anxiety disorder”, which I believed, so my PTSD went untreated for 12 more years.
When I was 32 I went to a primary care doctor for the first time in my adult life for a physical. I had specifically selected a doctor who was LGBT friendly. He fat shamed me – “Go home and lose weight” – even though I was already working out and starving myself in what was probably undiagnosed anorexia. I asked him about Truvada PrEP and he slut-shamed me. He missed any early signs of my norepinephrine disorder, although in retrospect I was starting to have early symptoms at the time.
When I first started seeing my current therapist at age 34, she referred me to my previous psychiatrist. He was more obese than I was, so thankfully I didn’t have to deal with any more fat shaming, but he ridiculed my interest in writing every time I mentioned it.
As far as I can tell, doctors are taught to condescend to their patients and to think poorly of them, especially if they are women, black, LGBT, or disabled. My current primary care doctor uses a wheelchair for mobility, and she is literally the only doctor I’ve ever had who has never made me feel judged or ignored. Together, you and her are the only two doctors who have never condescended to me or ridiculed me. My therapist isn’t a doctor but if you count all health care workers, that makes just 3 total out of about 10 or 12 depending on how you count. I just wanted you to know the stakes for me, and to know how much distress I must be in if I’m contemplating looking for a new doctor to talk to, despite the fact that I’m terrified of doing so.
Response 5: him to me
Very valid and well-communicated points. I’m glad to hear that you’ve felt like I have not condescended or ridiculed you, which I would think is the lowest bar for the doctor-patient relationship :-) .
On the other hand, what I think these email communications have shown me is that we have a strong respect for each other, and I’ve always appreciated your multi-faceted viewpoints on a variety of subjects. Please know that despite differences in opinions, I always have the utmost positive regard for you and will always advocate for you in whatever manner I can.
Take care and talk to you soon,