About Stigmas, Autism, and the SUS (Unified Health System)
Challenges and Reflections in Healthcare.
Photo: Oryanna Borges
"Faced with the recent controversies surrounding the SUS (Unified Health System), it is a temerity to position myself in a way that I know will resonate according to the current capacity for interpretation, and we know that this is not a very developed and practiced skill in this conjuncture. The political polarity that plagues Brazil has already ruined a relationship I considered a friendship and that was dear to me when, more than 10 years ago, I rebutted a headline about the Unified Health System with an observation that seemed logical to me: the SUS is not free. The SUS is a public service for which every citizen pays. Just analyze how much tax is paid in this country to understand that even a homeless person who spends half of their Bolsa Família (social welfare program) on cheap alcohol is contributing to the maintenance of the SUS. At the time I made that observation, the woman who shared the article replied to my comment, "What's the problem, didn't the SUS approve your bariatric surgery?" Yes, because alluding to appearance, mental health, personal hygiene, and sexuality are ways to strip a woman of value and any words she utters. Thus, my rejoinder confronted this affront instead of explaining that the fallacy of the free SUS leads people to receive care as if it were a favor, and that some healthcare professionals in the system offer it like alms. Or deny it like alms. Often relying on bureaucratization to deny basic care that is therefore essential to the humanization process of the less favored classes. As a woman, it is especially painful when another woman perpetuates this practice, someone who in theory should know how fragile our position is. And recently, a doctor used her privileged position not only to deny me care but also to label me as crazy. In a posteriori analysis, it seemed to me that if she had a little more power in this system, she would have given me a "sossega leão" (a type of sedative) and drugged me for hours in the infirmary, while sticking as many labels on me as she could borrow from the DSM, simply for protesting and saying, "My pain doesn't understand your bureaucracy." And of course, my 'craziness' would camouflage her lack of empathy and her own mistake.
It turns out that the doctor in question had issued prescriptions for my medication for two months, both with the same date of February 27th. I discovered in the second month that a medical prescription is valid for 30 days, and I went to the health center to schedule a new appointment. While the doctor was rewriting the prescriptions, I began to explain about the pain in my elbows that had been tormenting me for six months; and the sign of arthritis (or arthrosis) in my left index finger for a year; and about the physiotherapy needed due to an accident that occurred two years prior. As in the first consultation, she said, "This consultation is only to renew the prescription. To see these issues, you need to schedule another consultation." So I explained to her that we had already gone through this in the first consultation, that I had scheduled a second consultation for March 7th to address these issues, but since I have weekly migraines, on the day of the appointment I was surprised by one. And since then, I had been trying to go to the health center. But I am autistic, and a hyperfocus always emerged, a rain harmful to my only pair of sneakers whose complete dismantling is prevented by dry cleaning; another migraine; an exhaustion resulting from dealing with a public defender's office that also considers itself free. Finally, I only went to the health center after four days without medication. It would have been two if I hadn't been struck down by a stiff neck followed by a migraine. And the doctor waved the rules of the place in my face to deny her attention to my pains when I said, "How long would it take you to examine my elbows? Five minutes? That's the time spent on your argument." She asked me to stop talking so she could finish filling out the prescription. She asked how many pills I wanted. I explained the dosages I took. She didn't seem to understand anything and decided to give me 60 benzodiazepines. It takes me more than six months to use 30. If I have one migraine a week, that's thirty weeks to finish a blister pack taking one pill per crisis. And a responsible doctor should not give access to that much medication to a psychiatric patient. The statistics are prohibitive regarding the indiscriminate access of a level 1 support autistic person to medications like these. In fact, even paracetamol should be controlled for this support level, especially without a careful look at the patient's history. But all she cared about was getting rid of me. And I didn't give her a break, just like the printer paper, which ran out, extending my stay in the room. She left without saying anything and returned a few minutes later with sulfite sheets in her hands, leaving the office door open, where the small nurse who had attended to me the day before stood leaning against the doorframe. I continued talking to the doctor without processing this presence or the open door until the doctor raised her voice and told me to calm down, to which I replied that I was perfectly calm and continued to argue that she could spend that time examining my elbows or referring me to a specialist. She decided to refer me to physiotherapy. I asked if a physiotherapist makes diagnoses. As far as I knew, the physiotherapist treated what was recommended by the doctor and would treat my permanently damaged rotator cuff and my broken foot, but would not deal with my elbows without a diagnosis. She then stated that she could not do anything for my elbow. Seriously? Not even refer me to a specialist? That was exactly the question I asked, to which she responded by asking which specialist, and I replied with another question that she took as an answer and referred me to the orthopedist. But not before telling me to shut up. I retorted once more without giving her credit or power, "Oh yes, because you have that authority to tell me to shut up, don't you?!" She started to answer me that she wasn't an authority, it was something else, but she changed her mind and looked at the nurse in the doorway, ordering her to call security. That's when I realized the door was wide open and the nurse was there, who corrected the doctor: "Do you mean prepare the medication?" The doctor hesitated, and I repeated incredulously, "Security?!" I looked at the nurse and reinforced, "Security. Really bring security. And schedule an appointment for me with the social worker. I want to talk to her." The nurse was no longer seen. I ran into the social worker at the reception, but she had no time for me and would be going on vacation, returning only in May. I asked where and how I could complain about a doctor. She pointed to the administrator next to me. I asked to talk somewhere other than the hallway and was taken to a room on the first floor, where I was very politely invited to sit. After talking a lot and making it clear that the doctor wanted to paint me as crazy to the nurse, I asked, "Do I seem to be arguing with you?" She confirmed that I didn't. And since being argumentative in this case is synonymous with being crazy, I confess that I felt relieved, although aware that at no point did I actually lose my calm. With the best of my ability to argue, I intended to convince the doctor that she needed to make things a little easier considering my autistic condition; otherwise, I could live for years with the physical pain and only seek medical help when the inflammations had already irreversibly degenerated my tendons and joints, because I am used to physical pain and have a tolerance perhaps higher than normal and certainly higher than healthy. And I prefer this physical pain to the pain of dealing with these situations.
Before the diagnosis, by the way, I would have gotten sick after this altercation. And I would have despaired during it. And perhaps I would have given the doctor grounds to do what I concluded she would do while returning home, reflecting on the administrator's suggestion to file the complaint on the 156 portal of the city hall. I didn't want to harm the doctor. She has a foreign accent, and I suppose the life of an immigrant is not easy. But while reviewing what happened, I lingered on the scene of the nurse at the door. Did the doctor ask for medication? Did she request that the nurse drug me? If I had reacted emotionally to the order to calm down – that incendiary and detracting affront – would she have ordered my chemical, and perhaps physical, restraint? Or did she change her mind and intend to remove me from her room using security? The nurse's support alone would have been enough to seal my fate in that health unit. If I had gotten even a little upset...
It is at times like these that I realize how liberating a diagnosis can be. Before, gaslighting worked well, and I was in doubt; after all, could I be a little crazy after all?! The request/order to calm down then, that was a sure shot. My vertiginous fall. However, now I know that I am seeing a very common pattern of behavior that does not speak to my ability and intelligence but rather to who is reproducing this pattern. It is a low resource of those who cannot refute logic. And, above all, I allow myself to be calculating and predict some circumstances. Before my diagnosis, this rationality was the monster in me. Now it is my safeguard. That's why when the consultation was scheduled with this doctor, I prepared myself to hear the same recommendation as the previous consultation. But the one who knows my limitations is me, and the one who doesn't know the bureaucracies that hinder empathy whenever convenient is my pain. When a person has empathy, they listen and magically unblock the system. I have seen it happen a few times in this same SUS. Even the nurse whom she intended to have take me down with a pharmacological chokehold had already unblocked the system the day before, after listening to me.
Unfortunately, I couldn't complain on 156 because in São Paulo, this complaint can only be made by phone, and my call dropped as soon as I was transferred to the SUS ombudsman. On the second attempt, I felt indignation awaken a wave of anxiety, and I gave up before the IVR finished reciting the list of options that might lead me nowhere. Or perhaps harm someone. In my experience, the common thing would be for the administrator to defend her team, even if veiledly, and not suggest formalizing the complaint in a way that she would have support to act on it. Perhaps in that place, the doctor was the odd one out, as I have always been. Me for being neurodivergent, and her for being foreign. Perhaps, like me many times, she was in that position of strictly following the written rules of the place to try to fit in, only to be penalized for it very well. From perhaps to perhaps, I could let go of the formal complaint and be at peace with it. Not without observing that the doctor's name was one of the possible names of the public defender's lawyer who harmed me almost as much as the criminal, enabling, through indifference and incompetence, that I became a defendant in a civil lawsuit when I was the victim. VirginiaVeronicaValkiria, you will never be forgotten, even if not accurately remembered, because your misdeed gave the con artist security and ammunition to torture me for over 15 years and caused me many crises. Like the one that would prostrate me again the day after all this commotion, which did not represent a tenth of the usual affliction but still consumed a lot of mental energy and promoted coexistence, little familiar in peaceful terms, with "the monster in me." And so, when I decided that there would be a penalty for the insensitive doctor with little ability to humanely manage the time she has for her patients in the office, I was interrupted by a migraine. Quickly mitigated by access to my large supply of controlled medications. And the stiff neck disappeared along with it after a few hours of deep sleep, restoring the mobility of my neck and the fury of the penalty, even more voracious upon noting two migraines in 4 days.
The actions of these negligent professionals occupying the place of 'a public servant' are a contradiction when they seem to serve only themselves. And at the slightest sign of opposition, they distribute pen strokes, stamps, and initials that seal fates, without worrying about the human being in front of them. Intoxicated by the power that their titles and positions grant, serving the common good is not their priority. When they defend their colleagues, they do so out of private interest, without serving the ethics of social relations or private conduct. They are perpetrators of 'small' violences that kill the soul of the poor, who lack not only financial resources but also the resource of knowing their rights by knowing the laws and obligations of the public system.
When a woman is judged and despised for her sexuality when seeking a public health service, when she is thrown to the brink of madness at the first sign of resistance, provoked and discredited by violent communication, she stops seeking support in these places and is left helpless in a society where she doesn't have many places to turn. And in the case of an autistic person, the search for support that should be specialized but will trigger crises and exhaustion will be delayed and avoided, which can further compromise a health already affected by comorbidities and neurological limitations. When this autistic person is faced with the possibility of abusive restraint and the tying of their rights using the stigma of madness as a virtual but as stigmatizing straitjacket as the real one, the fragility of an autistic person at a support level is evidenced. Any professional who does not honor the Hippocratic oath can create a scene, stimulate a crisis, and use the pharmacological arsenal at their disposal to subdue a person who only recognizes the authority of knowledge and logic. Or that of empathy. I will never stop confronting this paltry service that spends the time that could be used to attend to me by refusing to attend to me. If this is the monster in me, I embrace it. And tenderly, without the commotion of the poem "Transe" from which I borrow a verse, I ask, "Who was the beast that lit the fuse?"
