I can't trust medical providers

Post Reply New Topic

I had a doctor's appointment yesterday at the new hospital and the doctor refused to turn off the light in the room we were in. My regular doctor's office always turns the light off for me. When the nurse first took my vitals she turned off the light and even used a flashlight to look at the paper she was writing on. I was so grateful. But the doctor turned the light back on and when I tried to explain my situation to her, she just insisted that she wanted the light on because it made her more comfortable. The problem with this particular hospital is that the rooms are all painted with the brightest most light reflecting paint they could have possibly come up with. So not only are the fluorescent ceiling lights too bright in and of themselves, but the paint on the walls makes that light bounce around all over the room. I did my best to mitigate the effect by squeezing my eyes shut and putting my hands over my face and eyes and dropping my head but none of that helped. The doctor didn't seem to care.

After about 40 or so minutes, I had had enough and I told her I was leaving. I tried to leave but I had already lost enough brain function that my legs had gotten extremely weak and I could not get out of the chair and stand up. She had to physically help me stand and walk to the hallway. The lights in the hallway were not as bad and they also have huge windows in the hallways which let in natural sunlight and they have a carpet on the floor so that helped. But I was still very overwhelmed especially since I had had an eeg just the day before which had also totally overwhelmed me.

But I was already past a critical point and the pattern on the carpet became too much for me visually as well. I managed to hobble down the corridor a bit hanging on the wall but my legs were becoming very weak. By the time I rounded the corner, I could no longer walk and I was starting to lose the ability to stay standing. The nurse who had been walking beside me the whole time threatened me and told me that I was not allowed to physically collapse onto the floor. Fortunately there was a chair there and I was able to collapse onto it. She asked me what was going on but I couldn't verbally respond but I also did not think I should have to since the doctor that I was just with and, that the nurse had just helped me walk away from, had told me that she was looking at and reviewing all of my medical conditions when I was in the room with her. If she had really been doing that, she should have noticed Autism and Cataplexy and catatonia which are at the top of the list in my chart and then she would have understood exactly what was going on. Eventually, they brought a wheelchair and then the nurse wheeled me to the front door of the hospital entrance, left me there and walked away. So I can only assume that they must have believed that I was faking.

Unfortunately, almost everybody believes that I am faking, especially in a hospital or a doctor's office. So, I have no reason to trust some of these medical providers anymore.

Oh skibum I'm so sorry. Not again. I don't understand why they didn't review your intake papers ahead of time to know which conditions you suffer. As you know I deal with the same sensory trauma, and the same fear of engaging with new people whether doctors or not. It's especially insulting when medical providers should be the ones to help us.

I don't know what else to say bc I'm in such a shutdown myself, emotionally. I just want you to know I care and I believe you, even when it seems like others don't. I wish there was something I could do. I haven't even had the strength to PM you but please know I'm here for you even if I'm not able to write as much as usual.

Thank you so much. And I am totally here for you too my dear friend.

I know you are. ^ Thanks for being such a good friend.

Feel free to write when you need to rant. I just feel badly I haven't had the spoons to reply. Maybe that's because it hits so close to home and we have so much empathy for each other. I"m trying to avoid my own emotions as much as possible so I guess you could call it a PM shut-down. I know I'll bounce back if and when I get my wits about me.



Sending strength.

Huh.
Sounds like this is your typical AS passing scenario -- where the autistic had to be accomodating one for the sake of NT's comfort.

And the fact that you're the patient and she's the doctor made it worse. In whichever interpretations.

Love you so much.

Yes. You are so right. I really think that people cannot believe that I am disabled because I don't look the part. So they refuse to give me any consideration or accommodation.

I’m so sorry. It is terrible not to be believed, much less suffer so much from it. Hugs.

Doctors ignoring their patients really angers me. My wife was diagnosed with a new autoimmune disease (she's collecting the whole set) and a specialist she was referred to walked in and said "I can tell you're fine just by looking at you." I was behind the door he just opened and when I said "Oh really?" he jumped and started to backpedal.

Sadly I have to go with my wife to new doctors for them to pay any attention to her.

I wish I could do that for myself! They ask me if I have any complaints and I tell them my arthritis is bothering me, preventing me from sleeping and they just ignore me.

Is there a way for you to have someone accompany you and advocate?

Thank you so much.

OMG!! That is disgusting. I can't believe that a doctor can get away with treating your wife that way. I hope you reported him.

Unfortunately I have no one to help me or to advocate for me in such a way. That is one of the problems with being a "high functioning" invisible Autistic. You can't get any kind of services to help you with things like this. If I were visibly Autistic, I would most likely be able to get help with someone who can accompany me and advocate for me in that way but not as an invisible Autistic. Also, there is a problem, in this country, I don't know about other countries where, for instance, say you wanted to have someone who could call Social Security on your behalf and talk to them on your behalf about your case or your situation. I was told by someone at Social Security that if I wanted to be able to have someone talk to them on my behalf, I would have to relinquish ALL control of ALL of my finances to a "legal guardian representative payee" who is officially representing me. That is the ONLY way that they would be allowed to talk to someone else about me. So I can't call them because of their music on their phone hold. I can't always go to their office because the waiting area can be overstimulating and during the height of the pandemic, their local office was not open to the public and there was no one there. So, because of their phone hold music, I would have to have someone else call for me but if in order for them to be allowed to talk to someone else for me, I would have to give up my civil rights and control of my finances to the person.

The other option would have been to have someone else place the call, and stay on until they picked up and then hand the phone to me or call me on three way. But the people who are my support coordinators and case workers are not willing or not allowed to do that. And I don't have any friends or family who are willing to do that either. So it kind of sucks.

When I was first applying for food stamps, one of my case workers actually went with me to the welfare office. But he told me he didn't have time to wait with me until they called me back to do the interview. So he left me to go to another appointment. Unfortunately, I didn't understand all the questions they were asking and botched up the interview. I got rejected for food stamps until much later on when we were able to clear up all the misunderstanding. But at least he made an effort to come and he sat with me in the waiting area until he had to leave for his next appointment.

The first case worker I had never even bothered to send in the original food stamp application because he decided that I would not qualify because he thought that they would also consider my family's income. I do not live with my family nor am I their dependent. But HE decided that it wasn't worth mailing in the application after we had filled it out because HE decided that I wouldn't qualify. So, I could have had food stamps for two years before I actually got them. This guy also never called me, never returned my calls or emails, he basically acted like I didn't exist. Yet he still works as a case worker in that agency.

But most of the time, when I ask a case worker to help me with something, they just tell me, no and to do to it myself.

Its common knowledge that fluorescent lighting and autism doesn't mix. That place seems like a lawsuit waiting to happen.

Possibly of interest:
>>1. Academic Autism Spectrum Partnership in Research and Education (AASPIRE)
>>2. AASPIRE's HEALTHCARE TOOLKIT: Patient Centered Care Tools for Autistic Adults
>>3. AASPIRE's HEALTHCARE TOOLKIT: "How Autism Can Affect Healthcare"

When I go to a doctor I typically print-off a copy of #3 to give them, as well as a one page list of which parts of it are most significant with respect to me.

Um. I wish I could say doing this helped. Usually it doesn't, though some doctors seem to have found it interesting.

Every doctor's office I have ever been in has fluorescent lights. They claim it's necessary for them to see what they need to see. I guess that would depend on what they are looking for. I am actually fine with then having fluorescent lights. I have no problem with them having them. What I do have a problem with, however, is them never having an alternative. Only my physical therapist in one location has brought in soft desk lamps once I told them about my issue. And every time I go there, they turn off the ceiling lights in the room and turn on the soft desk lamp. I think it's so wonderful. Not only is not overwhelming but it also creates a cozy, soft, and relaxing ambiance which is perfect for physical therapy and osteopathic manipulation. Some of those treatments can be very painful and having the lights dimmed can really help.

It's perfectly fine for them to have the ceiling lights for people who are not bothered by them but the simple thought of having a soft desk lamp available makes all the difference. And I also think that they should have soft lighting in the hallways and waiting rooms even though the hallways tend to be less bright. Unfortunately, many offices, and public areas including many doctor's offices, don't believe that we deserve such an inexpensive and simple accommodation that costs practically nothing and hurts no one.

The other problem is many medical places and hospitals have huge glass windows.
Walls and walls of windows and skylights and "natural sunlight!" which they think everyone loves.
I can't go in those places.

Wait, WHAT???? Are you a baby?????? WT_??? Yeah, I would do more than never see her again. I think her boss might be hearing from me.