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Medical PTSD redux
I got a pretty bad PTSD attack, finally replying to a comment on the epilepsy post, and thought I would write a little about it.
I've talked about the medical PTSD before, but this might help illustrate how that kind of thing can happen. A few days ago, rather coincidentally when I was thinking about needing to see the GP to try to get my blood sugar managed better and try to get a neurologist referral, I ran across the NAS Patients with autism spectrum disorders: information for health professionals sheet, which I hadn't seen before. I really, really wished that (a) it had been around when I was little, and (b) somebody had known it applied to me.
It also struck me pretty hard again that I've tended to keep feeling embarrassed and not wanting to discuss this kind of thing, but there is no good reason that someone should be ashamed of having run into problems from un/misdiagnosed autism.
But, the particular incident that won't stop going through my head now.
Not far off this time of year in 1999, when I was almost 25, I went in to have a second ACL reconstruction done, on the other knee. At that point, I was on SSI for presumed bipolar disorder, and living at home after I crashed out of college. I did not particularly want to have more surgery, anyway, but was under a lot of pressure from my mother, who had totally bought into the "she will be crippled for life otherwise" line. (About as true as the "Waah! You shouldn't even be able to walk now!") When the Medicaid coverage kicked in, I was taken to an orthopedist and scheduled for surgery.
Now, my mom had already demonstrated an appalling tendency to decide that if I didn't agree with what what she thought was good for me, it must be a sign of mental illness, while deluding herself into thinking her motives were totally pure. And had hospitalized me three times when I was in my teens; this was a not-so-subtle continuing threat. She had already made noises about my craziness in saying, "Gee, I think I'm doing OK with the knee." (Yes, I am also dealing with some fresh anger over just how wrong some of her behavior toward me was--not least, the not-totally-conscious gaslighting. And at being conditioned to think it was somehow right.) So, I did not feel like I had any choice whatsoever, and when you get down to it, did not.
I already had a history of really bad hospital experiences for pretty much the reasons it happened again this time (all covered by the NAS info sheet--though it did leave out advice like "Do not get three people to hold the patient down on the floor" and "Do not slap the patient, even if they're having 'tantrums'"). So, I did not want to be there at all to begin with and was extremely nervous going in.
Since this was officially called outpatient surgery to satisfy Medicaid, my mom took me to the hospital at about 6 in the morning--without drinking anything, etc. (when I'm pretty sure I was already diabetic and pretty badly dehydrated), but it was still less stressful than having to stay the night before. I also believed that it really would be outpatient, even after the previous surgery on the other knee.
All the ORs were full, so we got to wait in a patient room for a couple of hours, with buzzing and flickering fluorescent lights and the door to the noisy hall open, and people popping in and out and unexpectedly poking and prodding at me. Then they thought there was an OR open, and took me out in a wheelchair--only to find that there had been an emergency in the meantime. So, I got to sit in the noisy, fluorescent-bright hall with chattering nurses physically crowding me and keeping touching me and physically moving me around without saying anything (much less waiting for permission), in a wheelchair. After a while, I tried to get up and go to a bathroom, just to decompress some--but they told me not to go, ostensibly because the OR might open up any minute.
After about an hour of that--and listening to one of the nurses go on and on with hideous racist drivel, and their discussing how ridiculous it was that the hospital had to claim that surgeries were outpatient instead of requiring a stay, basically to defraud Medicaid--I just could not take it anymore. I was overloaded past the point of being able to talk coherently, and I needed to get out of there before I went into a full-blown meltdown. (I was also very aware, based on past experience, that I was liable to be considered to be having a psychotic episode if this did happen, and get treated accordingly.) So, I got up from the wheelchair and tried to walk out.
Bear in mind that my mother was right there in the hall, was in fact being treated as my guardian and spokesperson by the medical staff--and at no point tried to intervene on my behalf.
Yes, I was an adult who was there for elective orthopedic surgery--not a prisoner of any sort, nor even was this a psychiatric setting--and I had a perfect right to leave unmolested at any time. As it was, the same racist nurse tried to put her hands on me and stop me from leaving. I was very careful to avoid touching her, and kept walking. She lunged and tried to grab me, with some force. I just really wanted away from the whole situation. So I took off running--bad knee, hospital gown flapping behind me, and all. She chased me down the hospital corridors like a terrier, and tried to tackle me a couple of times. All because she thought I was crazy, and I defied her by trying to walk away in a peaceful manner. (I thought at the time that it was probably a good thing she didn't know I've also got few-generations-back African ancestry. :-| )
Nobody tried to stop her. They just gaped. OTOH, nobody else decided to stop me either.
The whole time, I was terrified and kept thinking, "oh shit, oh shit, this is such a no-win situation". I could not see anything good possibly coming of it, no matter what I did. I managed to keep the presence of mind to keep my arms up in the air, like I was dealing with the cops, when she was trying to physically assault me, so that nobody could claim I had attacked her. (Even though I really, really wanted to knock her down so she might stop chasing me.) Since she sent herself sprawling on a tile floor, while trying to take me down, I was also afraid that she would hurt herself and I would get blamed for it. I had no idea what to do, so I kept dodging and jinking and running. With a gimpy knee and a nurse repeatedly trying to tackle me down in front of witnesses. It was a truly absurd situation. And I was the one who was supposed to be crazy.
I had no idea what she was planning to do once she had me down on the ground--I'm not sure she did, either--but I did not want to find out. Especially since I didn't think I could avoid hitting her if she tried to hold me down, and I knew I'd be in real trouble then. Even though that is clearly self-defense.
Once I made it out an exit, I briefly considered heading off into the woods across from the hospital, hoping I could lose the nurse and hole up somewhere more peaceful for a while. But it was below freezing, I was barefoot in a hospital gown, and the nurse was gaining while I tried to figure out what to do. So I headed for my car in the parking lot, jumped in, and locked the doors. Without any keys magically lurking in the hospital gown. The damned nurse was banging on the windows and trying to open the doors, and trying to order me around. At that point, I was honestly expecting to get shipped off to the nearest state psych hospital (having Medicaid instead of private insurance) "for my own good".
No, I had basically no choice but to eventually come out of the car, and go back into the hospital "voluntarily" with my mother. Once I was back in the hall outside the OR, somebody (I still have no idea who she was) injected me with something without any warning or permission, and would not tell me what it was when I demanded to know before I passed out. Again, I was an adult there for elective orthopedic surgery.
At least I ended up with a private room, no extra charge.
When I woke up again, at some point after the surgery, I could not understand what people were saying and could not even talk enough to let people know that I was thirsty or needed pain medication, or to beg them to turn the damned television off before I had another meltdown. My coordination was bad enough that I fell over in the floor when a PT person tried to make me walk around--so they acted like it was a trial having to deal with somebody like me, and (thankfully) didn't come back. I overheard the R-word used more than once in the hallway. I still have no idea if that was "just" brain-scramble from the whole experience, or after-effects of whatever they injected me with; I certainly never responded to general anesthesia that way before. (Nobody ever told me what the mystery injection was, though I did ask more than once again when I was able to.)
After a few hours, my auditory processing was less scrambled, at least, but I still couldn't string together a sentence. The hefty doses of Ativan they kept giving me couldn't have helped with that. And yes, I got treated like a particularly stupid three-year-old the whole time. (Not that I liked that any better when I was three, nor is it appropriate dealing with anyone. At least no medical staff slapped me silly, like did happen when I was little and "being a brat"--i.e., having a meltdown and/or maybe a seizure--in a different hospital.)
Nobody mentioned (or at least I didn't process it) that they were waiting for me to eat something before I could leave, until afterward; I'd have forced something down before that if I had known! I got to stay there for three days "outpatient", with my clothes hidden somewhere, presumably in case I decided to crutch off into the sunset dragging the morphine pump behind me. Not that, based on the evidence so far, being stuck in a hospital gown would have stopped me if I'd been able and determined to leave.
Again, I was an adult there for elective orthopedic surgery, and they thought this was appropriate. It was all very insulting and humiliating. And I was ashamed of my own crazy, inexplicable behavior.
Finally, I got to leave. And did not get driven directly to one nuthouse or another, thank goodness.
My mother actually laughed more than once about my doing a Clean and Sober-style gown-flapping runner. It did not feel like laughing with me, even though she claimed to be sympathetic after the fact. I got very angry and wanted to bring assault charges against that damned nurse--I'd have included the doctor with the syringe if I'd thought I could have recognized her again--and got told to stop making such a big deal out of nothing, when everything turned out all right in the end. (For her, I guess.) I don't know if the nurse ever even got told off over her highly unprofessional, not to mention illegal, behavior.
Yeah, that was a rather extreme example, but in the back of my mind, I am still half-expecting to get treated that way.
Reading the NAS info sheet, I couldn't help but get a little more hopeful, though. At least now I do know why I behaved so "inexplicably" in overloading settings in the past, and that I did not somehow deserve shitty treatment because I'm autistic. At least with most of my mind, I'm no longer ashamed and as likely to let other people run right over me. I no longer feel crazy for getting overloaded, now that I know what's happening. And I am less inclined to let other people treat me like they think crazy people should be treated.
And I have someone who is willing to back me up--and whom I trust to do so, without deciding they know what is really good for me. Now I have a better idea of what kind of help I need from someone who goes with me to the doctor's, and can discuss what might work to keep me from getting so overloaded that I shut down and can't half remember why I'm there, much less communicate properly, in the first place. (This has been a persistent problem in past.) And I trust him not to take over with his own agenda if that should happen, and act like I have no right to complain. Hopefully, with backup, I'll be less likely to get talked down to and dismissed--or assumed to be batshit crazy--because I am not communicating the way they expect. Much less worrying about getting sectioned if I do end up having some kind of meltdown. (Also, I have Asperger's and not bipolar with psychotic features in my file now; shame this probably does make a practical difference.)
Hopefully, having backup will make the expected (if not exactly appropriate) browbeating over not having been to see the GP in years now easier to deal with. It doesn't exactly help one feel secure and comfortable talking to the doctor, getting treated like some kind of naughty child. And in past I haven't been able to say anything much, never mind object to getting talked to that way for any reason, much less because of disabilities.
Very importantly, I know that I do have the right to leave at any point, whether or not I'm able to explain myself verbally at the time. And, having actually discussed it with Ingvar, he's prepared to call the cops if anybody lays their hands on me to try to stop me. Funny how the NHS zero tolerance BS is actually described as "Policy on violent or abusive patients":
I guess they'll call the cops if they assault you. I have already been impressed by what kind of respect and courtesy some of their staff have considered "due". Maybe you just get arrested if you reciprocate? *snort*
ETA: I do know of a couple of cases, involving people I knew back in Virginia, where similar policies were actually used against them. Including one middle-aged man who got an assault and battery conviction because he kicked a staff member who was manhandling him around and trying to strap him down in restraints because he was "argumentative". (As would most people not diagnosed with a mental illness, I imagine--turn argumentative, too, under the circumstances!) And it apparently did not make any difference to his legal culpability that he was on a 72-hour hold (in the same state hospital I was afraid of winding up in), because of a manic episode, at the time. Nor that Virginia's whole state hospital system was at that time under federal investigation for abusive and punitive use of restraints that killed people. (Including one woman who died "after lying in restraints for 300 hours, including two stretches of nearly 110 hours straight, as punishment for outbursts against staff", after they had been warned that she had health problems that might kill her if restrained.)
So I am not just being sarky here; it's a very real problem. /ETA
But, just knowing these things makes me feel less helpless and like I do have some control over what happens. As anyone should have. Maybe that will be enough to get me to the GP's for more diabetes medication.
I've talked about the medical PTSD before, but this might help illustrate how that kind of thing can happen. A few days ago, rather coincidentally when I was thinking about needing to see the GP to try to get my blood sugar managed better and try to get a neurologist referral, I ran across the NAS Patients with autism spectrum disorders: information for health professionals sheet, which I hadn't seen before. I really, really wished that (a) it had been around when I was little, and (b) somebody had known it applied to me.
It also struck me pretty hard again that I've tended to keep feeling embarrassed and not wanting to discuss this kind of thing, but there is no good reason that someone should be ashamed of having run into problems from un/misdiagnosed autism.
But, the particular incident that won't stop going through my head now.
Not far off this time of year in 1999, when I was almost 25, I went in to have a second ACL reconstruction done, on the other knee. At that point, I was on SSI for presumed bipolar disorder, and living at home after I crashed out of college. I did not particularly want to have more surgery, anyway, but was under a lot of pressure from my mother, who had totally bought into the "she will be crippled for life otherwise" line. (About as true as the "Waah! You shouldn't even be able to walk now!") When the Medicaid coverage kicked in, I was taken to an orthopedist and scheduled for surgery.
Now, my mom had already demonstrated an appalling tendency to decide that if I didn't agree with what what she thought was good for me, it must be a sign of mental illness, while deluding herself into thinking her motives were totally pure. And had hospitalized me three times when I was in my teens; this was a not-so-subtle continuing threat. She had already made noises about my craziness in saying, "Gee, I think I'm doing OK with the knee." (Yes, I am also dealing with some fresh anger over just how wrong some of her behavior toward me was--not least, the not-totally-conscious gaslighting. And at being conditioned to think it was somehow right.) So, I did not feel like I had any choice whatsoever, and when you get down to it, did not.
I already had a history of really bad hospital experiences for pretty much the reasons it happened again this time (all covered by the NAS info sheet--though it did leave out advice like "Do not get three people to hold the patient down on the floor" and "Do not slap the patient, even if they're having 'tantrums'"). So, I did not want to be there at all to begin with and was extremely nervous going in.
Since this was officially called outpatient surgery to satisfy Medicaid, my mom took me to the hospital at about 6 in the morning--without drinking anything, etc. (when I'm pretty sure I was already diabetic and pretty badly dehydrated), but it was still less stressful than having to stay the night before. I also believed that it really would be outpatient, even after the previous surgery on the other knee.
All the ORs were full, so we got to wait in a patient room for a couple of hours, with buzzing and flickering fluorescent lights and the door to the noisy hall open, and people popping in and out and unexpectedly poking and prodding at me. Then they thought there was an OR open, and took me out in a wheelchair--only to find that there had been an emergency in the meantime. So, I got to sit in the noisy, fluorescent-bright hall with chattering nurses physically crowding me and keeping touching me and physically moving me around without saying anything (much less waiting for permission), in a wheelchair. After a while, I tried to get up and go to a bathroom, just to decompress some--but they told me not to go, ostensibly because the OR might open up any minute.
After about an hour of that--and listening to one of the nurses go on and on with hideous racist drivel, and their discussing how ridiculous it was that the hospital had to claim that surgeries were outpatient instead of requiring a stay, basically to defraud Medicaid--I just could not take it anymore. I was overloaded past the point of being able to talk coherently, and I needed to get out of there before I went into a full-blown meltdown. (I was also very aware, based on past experience, that I was liable to be considered to be having a psychotic episode if this did happen, and get treated accordingly.) So, I got up from the wheelchair and tried to walk out.
Bear in mind that my mother was right there in the hall, was in fact being treated as my guardian and spokesperson by the medical staff--and at no point tried to intervene on my behalf.
Yes, I was an adult who was there for elective orthopedic surgery--not a prisoner of any sort, nor even was this a psychiatric setting--and I had a perfect right to leave unmolested at any time. As it was, the same racist nurse tried to put her hands on me and stop me from leaving. I was very careful to avoid touching her, and kept walking. She lunged and tried to grab me, with some force. I just really wanted away from the whole situation. So I took off running--bad knee, hospital gown flapping behind me, and all. She chased me down the hospital corridors like a terrier, and tried to tackle me a couple of times. All because she thought I was crazy, and I defied her by trying to walk away in a peaceful manner. (I thought at the time that it was probably a good thing she didn't know I've also got few-generations-back African ancestry. :-| )
Nobody tried to stop her. They just gaped. OTOH, nobody else decided to stop me either.
The whole time, I was terrified and kept thinking, "oh shit, oh shit, this is such a no-win situation". I could not see anything good possibly coming of it, no matter what I did. I managed to keep the presence of mind to keep my arms up in the air, like I was dealing with the cops, when she was trying to physically assault me, so that nobody could claim I had attacked her. (Even though I really, really wanted to knock her down so she might stop chasing me.) Since she sent herself sprawling on a tile floor, while trying to take me down, I was also afraid that she would hurt herself and I would get blamed for it. I had no idea what to do, so I kept dodging and jinking and running. With a gimpy knee and a nurse repeatedly trying to tackle me down in front of witnesses. It was a truly absurd situation. And I was the one who was supposed to be crazy.
I had no idea what she was planning to do once she had me down on the ground--I'm not sure she did, either--but I did not want to find out. Especially since I didn't think I could avoid hitting her if she tried to hold me down, and I knew I'd be in real trouble then. Even though that is clearly self-defense.
Once I made it out an exit, I briefly considered heading off into the woods across from the hospital, hoping I could lose the nurse and hole up somewhere more peaceful for a while. But it was below freezing, I was barefoot in a hospital gown, and the nurse was gaining while I tried to figure out what to do. So I headed for my car in the parking lot, jumped in, and locked the doors. Without any keys magically lurking in the hospital gown. The damned nurse was banging on the windows and trying to open the doors, and trying to order me around. At that point, I was honestly expecting to get shipped off to the nearest state psych hospital (having Medicaid instead of private insurance) "for my own good".
No, I had basically no choice but to eventually come out of the car, and go back into the hospital "voluntarily" with my mother. Once I was back in the hall outside the OR, somebody (I still have no idea who she was) injected me with something without any warning or permission, and would not tell me what it was when I demanded to know before I passed out. Again, I was an adult there for elective orthopedic surgery.
At least I ended up with a private room, no extra charge.
When I woke up again, at some point after the surgery, I could not understand what people were saying and could not even talk enough to let people know that I was thirsty or needed pain medication, or to beg them to turn the damned television off before I had another meltdown. My coordination was bad enough that I fell over in the floor when a PT person tried to make me walk around--so they acted like it was a trial having to deal with somebody like me, and (thankfully) didn't come back. I overheard the R-word used more than once in the hallway. I still have no idea if that was "just" brain-scramble from the whole experience, or after-effects of whatever they injected me with; I certainly never responded to general anesthesia that way before. (Nobody ever told me what the mystery injection was, though I did ask more than once again when I was able to.)
After a few hours, my auditory processing was less scrambled, at least, but I still couldn't string together a sentence. The hefty doses of Ativan they kept giving me couldn't have helped with that. And yes, I got treated like a particularly stupid three-year-old the whole time. (Not that I liked that any better when I was three, nor is it appropriate dealing with anyone. At least no medical staff slapped me silly, like did happen when I was little and "being a brat"--i.e., having a meltdown and/or maybe a seizure--in a different hospital.)
Nobody mentioned (or at least I didn't process it) that they were waiting for me to eat something before I could leave, until afterward; I'd have forced something down before that if I had known! I got to stay there for three days "outpatient", with my clothes hidden somewhere, presumably in case I decided to crutch off into the sunset dragging the morphine pump behind me. Not that, based on the evidence so far, being stuck in a hospital gown would have stopped me if I'd been able and determined to leave.
Again, I was an adult there for elective orthopedic surgery, and they thought this was appropriate. It was all very insulting and humiliating. And I was ashamed of my own crazy, inexplicable behavior.
Finally, I got to leave. And did not get driven directly to one nuthouse or another, thank goodness.
My mother actually laughed more than once about my doing a Clean and Sober-style gown-flapping runner. It did not feel like laughing with me, even though she claimed to be sympathetic after the fact. I got very angry and wanted to bring assault charges against that damned nurse--I'd have included the doctor with the syringe if I'd thought I could have recognized her again--and got told to stop making such a big deal out of nothing, when everything turned out all right in the end. (For her, I guess.) I don't know if the nurse ever even got told off over her highly unprofessional, not to mention illegal, behavior.
Yeah, that was a rather extreme example, but in the back of my mind, I am still half-expecting to get treated that way.
Reading the NAS info sheet, I couldn't help but get a little more hopeful, though. At least now I do know why I behaved so "inexplicably" in overloading settings in the past, and that I did not somehow deserve shitty treatment because I'm autistic. At least with most of my mind, I'm no longer ashamed and as likely to let other people run right over me. I no longer feel crazy for getting overloaded, now that I know what's happening. And I am less inclined to let other people treat me like they think crazy people should be treated.
And I have someone who is willing to back me up--and whom I trust to do so, without deciding they know what is really good for me. Now I have a better idea of what kind of help I need from someone who goes with me to the doctor's, and can discuss what might work to keep me from getting so overloaded that I shut down and can't half remember why I'm there, much less communicate properly, in the first place. (This has been a persistent problem in past.) And I trust him not to take over with his own agenda if that should happen, and act like I have no right to complain. Hopefully, with backup, I'll be less likely to get talked down to and dismissed--or assumed to be batshit crazy--because I am not communicating the way they expect. Much less worrying about getting sectioned if I do end up having some kind of meltdown. (Also, I have Asperger's and not bipolar with psychotic features in my file now; shame this probably does make a practical difference.)
Hopefully, having backup will make the expected (if not exactly appropriate) browbeating over not having been to see the GP in years now easier to deal with. It doesn't exactly help one feel secure and comfortable talking to the doctor, getting treated like some kind of naughty child. And in past I haven't been able to say anything much, never mind object to getting talked to that way for any reason, much less because of disabilities.
Very importantly, I know that I do have the right to leave at any point, whether or not I'm able to explain myself verbally at the time. And, having actually discussed it with Ingvar, he's prepared to call the cops if anybody lays their hands on me to try to stop me. Funny how the NHS zero tolerance BS is actually described as "Policy on violent or abusive patients":
We operate the NHS Zero Tolerance Policy to safeguard staff and patient welfare. Our Team shall always show due respect and courtesy when dealing with Patients. In turn, we would request Patients to reciprocate the same. No form of aggression, verbal or physical in nature would be tolerated and may result in Patient removal and being reported to the Police.
I guess they'll call the cops if they assault you. I have already been impressed by what kind of respect and courtesy some of their staff have considered "due". Maybe you just get arrested if you reciprocate? *snort*
ETA: I do know of a couple of cases, involving people I knew back in Virginia, where similar policies were actually used against them. Including one middle-aged man who got an assault and battery conviction because he kicked a staff member who was manhandling him around and trying to strap him down in restraints because he was "argumentative". (As would most people not diagnosed with a mental illness, I imagine--turn argumentative, too, under the circumstances!) And it apparently did not make any difference to his legal culpability that he was on a 72-hour hold (in the same state hospital I was afraid of winding up in), because of a manic episode, at the time. Nor that Virginia's whole state hospital system was at that time under federal investigation for abusive and punitive use of restraints that killed people. (Including one woman who died "after lying in restraints for 300 hours, including two stretches of nearly 110 hours straight, as punishment for outbursts against staff", after they had been warned that she had health problems that might kill her if restrained.)
So I am not just being sarky here; it's a very real problem. /ETA
But, just knowing these things makes me feel less helpless and like I do have some control over what happens. As anyone should have. Maybe that will be enough to get me to the GP's for more diabetes medication.
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And she wondered why I didn't want to live with her again after college.
*dark chuckle* But she only wanted what was best for you! Oh my.
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Like I said in another reply, I feel lucky compared to people who come across as "low-functioning" or "crazy" more regularly. :( And a lot of them have no effective way of complaining, much less people who want to hear about it. This stuff has got to stop.
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It's also just really, really frustrating that this kind of behavior is frequently considered an OK way of dealing with people who are perceived as having or who really do have certain disabilities. And the hateful-acting (minority of) medical personnel usually get away with it, AFAICT, especially if the person can't complain effectively. I've gotten tastes of some shitty behavior, but suspect it's nothing compared to what people who more regularly come across as "low-functioning" and/or "crazy-acting" get to deal with on a regular basis. It needs to stop.
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Thank you for helping me understand you and me.
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