This is my story….
CW for medical ableism and mean girl nurses.
I once had mean nurses, and my dialysis clinic would not address this…I would just go to dialysis and suffer.
It wasn’t until I had made enough noise that I got my whole schedule changed to early mornings on Mondays, Wednesdays and Friday, from 9 AM to 1:45 PM, with an extra half hour built in for bathroom breaks, because my kidneys are functioning very well, and I still pee normally.
Nurse W the mean girl nurse in my story below, still continued to work at my dialysis clinic until August 2022….and as far as I know, is still a practicing RN elsewhere.
After my schedule change, I was still in the isolation room, until they began to use it for COVID patients, instead of sending all the COVID patients all the way to San Luis Obispo.
When I had an explosive meltdown due to two mean girl techs on the floor of Side B where I was moved to, they moved me back to Side A, where I still am, where it has been mostly better now.
Below is my story of a nurse who I wanted so much to love, but she would get in moods that were for me, terrifying, especially because I was set off away from all of the other patients, in the ISO room, so I could stim freely without disturbing the other patients.
I wasn’t safe though in the ISO room because I was where mean nurses and techs could get away with mistreating me because people out on the floor couldn’t hear what they were saying and doing to me.
Just reading this in my memories today, is still utterly traumatizing, it makes me shake to read what I went through — but these are stories that still need to be told……if we don’t, these nurses will continue to get away with treating patients the horrible way that Nurse W treated me.
WHEN MEAN GIRL NURSE W WAS MY DIALYSIS NURSE
From about October 2020 to September 2021, I had Nurse W as my dialysis nurse. I was doing my dialysis in the isolation room because I stim and I also have loud meltdowns when they are not nice and accommodating of my autistic sensory triggers and needs.
She was nice in the beginning, but it was glaringly evident that she was one of those California Mean Girls too….even though she kept telling me she was not a Mean Girl….I knew she was, because of the whole aura she projected….I saw it in how she didn’t just walk, but strutted through her whole side of Side B, and in and out of my isolation room that I used to be in.
The following is a blog I wrote about her after shit hit the fan and I had to be moved to an early morning schedule to escape having to have her as my nurse anymore.
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When, even after I have bent over backwards to educate my dialysis nurse about my autism and neurodivergence, my dialysis nurse still:
–One Saturday in December of 2020, repeatedly slammed shut the ISO room door on me when I kept melting down because she kept yelling at me and scolding me, and saying I needed tough love and ABA for my “disruptive behaviors”, then months later when this is again brought up, tells me:
–Oh, but I didn’t slam your door! I wasn’t the one who slammed your door! It was the tech, A, who did! You’re remembering things wrong! I wouldn’t do such a thing to you!”
That is what gaslighting is, folks. And gaslighting is abuse. And yes, she was the one who kept yelling at me and slamming my door shut on me.
It’s also a form of restraint and seclusion, to slam my door shut on me so me and my machine if it alarms, cannot be heard.
–On that same Saturday, what started my Saturday afternoon 4 hours-long meltdown spree, was when she was prepping me to get me put on the machine, I asked her if she had read the list of neurodivergent-affirming autistic resources, she said to me:
“Oh, well, okay, I did read ‘some’ of it, but I’m not going to follow it, because I also saw these ‘other’ videos that told me I am to treat you with tough love, and not give in to your ‘behavior’.”
When I tried to tell her why ABA is not the way to treat ANY autistic person, she replied with: “I am a professionally, medically- trained nurse, so I am going to go with what is ‘evidence-based’.”
THAT, exactly, was why I was having so many meltdowns that Saturday! The Saturday that started all of my problems with Nurse W!
It threw me into a panic because she wanted to treat me with literal ABA therapy! Because she went right to the pro-ABA videos, and the ones where parents film their autistic children’s most vulnerable moments, when they are in full-on distress, crying and on the toilet even. The very videos that I had begged her not to watch. And she proceeded to believe those hateful horrible videos over actually autistic people who have BEEN through ABA therapy HELL.
This was how my family treated me when I was growing up, and none of them knew I was autistic, just that I had childhood schizophrenia, and a “perceptual handicap”….the terminology of the ’60’s.
I was treated this way all through school. By most police officers. Because yes, I have had to deal with alot of police. I was also treated this way by most people who tried to befriend me. And by a long string of abusive caregivers when my physical health began going downhill.
And it traumatized me, over and over and OVER again, and gave me lifelong deep-seated trust and abandonment issues, lifelong self esteem issues and lifelong Complex PTSD—on top of my autism.
–On that same Saturday in December of 2020, also yells at me because a kind tech turned the horrible bright lights off for me because they were literally hurting my eyes, and she, the nurse comes in and angrily snaps them right back on, yelling at me for having them turned off.
(I get that it is state law to have a VERY well-lit dialysis clinic,, but why keep yelling at me and scolding me like I’m a little child being punished, because the damn sunlight-bright LED lights are literally HURTING MY EYES????)
–Calls me paranoid and says it is all in my head when I tell her my heparin is not running in the machine
or I am having weird heart palpitations,
or my machine has been set to take off much more fluid than I KNOW my body can handle at one time.
–Every single fear, question and concern I have as a patient is dismissed as me just imagining things, it’s all in my head, I’m being paranoid, or “I’m the nurse, I know what I’m doing, so be quiet”—and my questions and concerns go unanswered.
–Turns the machine monitor away from me suddenly, when she knows that is also a trigger, to not be able to see my machine’s monitor, then yells at me like I’m an unwanted dog to “get out of here, go to the bathroom now!” in a scary mean yell voice, when I protest about my machine monitor being moved so I can no longer see what is going on.
–Won’t let me write what I want to write on my Against Medical Advice form and gets angry about it telling me:
“Okay, you need to stop! Oh…that’s it! I no longer trust you. Our whole friendship is going to be much different now. You’re not going to get any of the perks and goodies I’ve been giving you anymore, things are going to be much different now, you have lost all of my trust in you!”
That is a literal threat, folks.
When Nurse W presented me with the AMA to sign she had written “refusal to let closing nurse do her take-off” on it, so I crossed that out, and went to write a less accusatory and judgmental version.
That pissed Nurse W off, and she began saying the horrible things she said to me above.
–Still orders me in a loud strict yelling voice that she knows upsets me: “PUT your MASK on!” when I genuinely forget to put it on.
*Keeps labeling me as a refusal this, a refusal that, and then throws in non-compliant and high maintenance when I have asked her NUMEROUS TIMES to stop labeling me those things!
I am autistic,
I am wired differently
and this whole dialysis clinic is a daily sensory NIGHTMARE for me to have to sit in for four hours a day 3 times a week.
–Tells me, with glee, like she is threatening me with punishment, that she is a mandated reporter and has to report what I have just told her, to the authorities, when I tell her I feel like I want to die, instead of talking TO me COMPASSIONATELY to find out why I am feeling like I want to die—or getting the social worker so I can talk to them about why I reach the point of such overwhelm that I want to die—and I am left feeling totally unheard and invalidated yet again by my nurse.
–When one day I say out of my desperation I wish I would just crash on the machine today, and she uses this to threaten me that she cannot dialyze me when I tell her things like that—-instead of talking TO me and finding out why I feel this way.
–Repeatedly calls me paranoid, repeatedly tells me I am imagining things, repeatedly orders me around in a stern voice like I am still in grade school—and does this—over and over and over again till I just want to scream.
–On yet another Saturday, Saturday 9/11, she threatens to call the police when I am having a meltdown for being punished yet again by her, when I am just trying to show her how to wrap the ends of my catheter because she is doing it literally all crooked like she knows how I hate to have it done.
–On that same Saturday, tells the nice tech to not ask my permission anymore to take my temp, when it has been written in my plan that all of them are to ask before they just do things to my body. Using my boundaries, my right to my bodily autonomy, and my very sensory needs as weapons to punish me when I am “acting out”—her words.
That, also is emotional blackmail, and is all levels of abuse.
On Saturday 9/11, she and I were both on edge. I came in already upset. Because my house had a million nats in it that morning.
What made her take me off of my machine a whole hour early that day?
It was not that I was scaring one of her new patients with my meltdown—
—it was actually because I made the statement out of sheer frustration at being barked at by her to “Put your mask up!”—instead of her asking me gently—
—when she came into see why I was melting down in the first place. Which was because I could not get my backpack off of its tray table. My backpack was stuck. I could not get it off the tray table.
I made the statement: “I am done.” That was her MAIN cause to yank me off of my machine and totally disregard my sensory boundaries and personal space.
She keeps on treating me like I am a bad behavior instead of an autistic 61 year old struggling to cope with a clinic that is NOT AT ALL set UP for autistic folks.
It is literally as if she looks for reasons to yell at me, scold me, and shorten my treatments.
For four whole months—from December 2020 to April 2021—she would put me on late, and then I would have to leave early, often 1 to 2 hours early, because she would sit at her computer and wait until 1:30 to put me on.
She as well as two other techs all huddle together, and it is like they look for ways to antagonize me into a meltdown, just so that they can then punish me. And then laugh and gloat about it.
This happens mostly on Saturdays when management and social workers are not there, but has also happened on Tuesdays and Thursdays as well.
So. After reading all of this….please try to put yourself in my shoes.
Would these things not make you feel like you can no longer trust this woman, this nurse, to take care of your dialysis treatments?
Would these things not make you terrified to have this nurse take care of you anymore?
Especially since you are away from everyone else in the isolation room so you can still do your vocal stims that help keep you calm enough to get through 4 hours of being literally tied to a dialysis machine, and, because you are in the ISO room, you don’t have to have your mask on when people aren’t in the room with you?
I would have put my mask up, but please, for the love of God, ask me nicely.
She can be nice…very, very nice and sweet, but then these trainwrecks happen and actually ruin all of the nice times with her.
But, tell me, please…..
Would this not make you feel like you do not matter as a human being to this nurse???
Would this not make you terrified to ever be alone in the room ever again with this nurse???
Would this not make you feel vulnerable???
Would this not make you cringe when you now have to even hear this nurse’s voice????
Does all of this not go against the patients’ rights, of which your clinic gave me a copy of when I first signed up for dialysis treatments at this clinic?
Again.
I am Autistic.
I was born Autistic.
It IS a whole different way of being,
processing,
and experiencing life
for those of us who are Autistic.
You cannot solve and cure our autism.
When you yell, it literally is like we are DYING. Your yelling tells us we are wrong and broken. Shameful. And Less Than.
Autism is a disability. A disability that is protected under the ADA.
Ask yourself again, would YOU want this nurse to continue to work on you if YOU were autistic, and she kept treating you like you were a fucking criminal instead of the Autistic adult human being you are????
She may be a new nurse.
She may be human.
She may have a problem with anxiety when under stress.
But guess what? So am I….
Still a new patient
I am human.
I have a problem with anxiety when I am under stress.
I don’t like having meltdowns. I know it frightens the other patients. I try my best to handle having to be strapped to a machine in those uncomfortable chairs for 4 hours.
I try my best to always be considerate and kind to everyone there.
I bend over backwards to meet you all halfway there at this clinic.
Because I DO care.
I DO have compassion.
And great empathy for others besides just me.
I GET it that that one Saturday was 9/11. The 20th anniversary of a horrific event that I also saw happen before my eyes on live TV. Many of you lost loved ones and friends on that awful day.
God, I GET that so hard!!!!!!!!!!
But that was still no reason for Nurse W to yell at me, and scold me, and then yank me away from my lifesaving dialysis—-just for me saying “I am done.”???? Her words, again.
Tell me why, please, should there be any valid reason to repeatedly keep punishing me for what I cannot help as an autistic who has to undergo this dialysis just to live. In a building that is not set up for autistic people?
Why does this give nurses like W the right to continue to treat me like I’m a bad criminal, instead of an autistic adult who is more often than not, in a consistent state of sensory overwhelm when I have to go there to do my lifesaving dialysis.
Especially after I have educated this nurse
over
and over
and over
and over
and OVER again???
Tell me. Please. I am waiting and I am listening.
—-
A post script: They have, temporarily given me the head nurses as my nurse, and Nurse W was gone last week, but yesterday she was back on, even though she didn’t take care of me, one of the head nurses did—-even so, I still had to see and hear Nurse W’s voice, and it killed me to be in that room still having to see and hear her.
I am still waiting in suspense as to how this is going to be handled.
” (Smiley face yellow emoji)
Melissa Fields, Autist 