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siuan
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09 Oct 2007, 9:31 pm

Ever get in trouble for being you?

Allow me to explain. A little over a year ago I was diagnosed with a potentially serious condition related to my pregnancy. It's not rare, but it's uncommon. I was obviously frightened. I had a lot of questions early on, especially since oly about 50% make a full recovery without some intervention. I was blessed to be that 50%. In the mean time I sought comfort in the one support forum the internet has for this condition. Because I asked so many questions and knew so much about it, I was kicked out due to my "anxiety level". Um, you hear you have a condition that you could require lifetime treatment and have lifelong disability (or death) from and I wasn't supposed to worry?

The problem was "all my questions". Well, medicine is my "thing", my interest anyhow. So yeah, I asked a lot of questions. I guess I was a thorn in the butt of a few of the people who had medical degrees already, and the moderator banned me. I felt really lost and alone after that. No warning, no "hey can you chill with the questions"...nada. Just banned. One day I couldn't log in anymore, and the modrator sent me a scathing letter about how I needed mental help for my "obsession" with my condition. I did heal, I'm better now, it's all behind me. But I do wonder...have you experienced similar for basically sucking at etiquette? I guess NTs may have these questions (I always had people say, "Hey Siuan, great question!") but they know better than to ask?

This happened some time ago, but it's one of those WTF moments that has stuck with me.


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OregonBecky
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09 Oct 2007, 9:44 pm

It's the people who grab onto a subject and hang onto it like a pitbull until they are satisfied with the outcome who make the new discoveries and change the world.

I've had people get annoyed with me for asking too many questions. Ironically that happened too often with autism consultants and special ed teams.


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09 Oct 2007, 9:57 pm

siuan wrote:
Ever get in trouble for being you?

Allow me to explain. A little over a year ago I was diagnosed with a potentially serious condition related to my pregnancy. It's not rare, but it's uncommon. I was obviously frightened. I had a lot of questions early on, especially since oly about 50% make a full recovery without some intervention. I was blessed to be that 50%. In the mean time I sought comfort in the one support forum the internet has for this condition. Because I asked so many questions and knew so much about it, I was kicked out due to my "anxiety level". Um, you hear you have a condition that you could require lifetime treatment and have lifelong disability (or death) from and I wasn't supposed to worry?

The problem was "all my questions". Well, medicine is my "thing", my interest anyhow. So yeah, I asked a lot of questions. I guess I was a thorn in the butt of a few of the people who had medical degrees already, and the moderator banned me. I felt really lost and alone after that. No warning, no "hey can you chill with the questions"...nada. Just banned. One day I couldn't log in anymore, and the modrator sent me a scathing letter about how I needed mental help for my "obsession" with my condition. I did heal, I'm better now, it's all behind me. But I do wonder...have you experienced similar for basically sucking at etiquette? I guess NTs may have these questions (I always had people say, "Hey Siuan, great question!") but they know better than to ask?

This happened some time ago, but it's one of those WTF moments that has stuck with me.


I would just like to say that the moderator should not ban you for wanting to learn about the condition that you had. So what, you like asking questions, there should not be a problem. It's better to ask questions that keep all of the anxiety inside and just sit there wondering the answer.

I have not been personally banned for asking too many questions, but I ask lots of questions in real life generally. The people who I ask them to don't tell me that I am asking too many and then all of a sudden start yelling at me and telling me to stop obsessing :?


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09 Oct 2007, 9:58 pm

That sucks. I have never been banned for that but when I was in high school, kids would get mad at me for asking too many questions. Teachers seemed to make a big deal about it in my IEP meetings because they write it on the IEP page about me and they mention it at the meeting.



EvilKimEvil
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09 Oct 2007, 10:24 pm

When I was in the hospital with pneumonia, I asked the doctor a question about my treatment. I thought it was a pretty normal, harmless question. I think I asked why he had decided to give me a certain drug or do a certain test. I wasn't feeling anxious; I was simply curious because medicine is also one of my main interests. He didn't even answer my question. He just said, "All right, I'll get you something for your anxiety." Then he left without giving me a chance to explain that I wasn't anxious. From then on, I was forced to take valium four times a day. When I got home, I went through an unpleasant withdrawal including insomnia, depression, and anxiety.



siuan
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10 Oct 2007, 12:27 am

EvilKimEvil wrote:
When I was in the hospital with pneumonia, I asked the doctor a question about my treatment. I thought it was a pretty normal, harmless question. I think I asked why he had decided to give me a certain drug or do a certain test. I wasn't feeling anxious; I was simply curious because medicine is also one of my main interests. He didn't even answer my question. He just said, "All right, I'll get you something for your anxiety." Then he left without giving me a chance to explain that I wasn't anxious. From then on, I was forced to take valium four times a day. When I got home, I went through an unpleasant withdrawal including insomnia, depression, and anxiety.


I've encountered doctors like that. I've left hospitals for that reason. First of all, you have the right to refuse a particular treatment and demand better care. Second of all, you had the right to have your questions answered, or demand another doctor to answer them. If all else failed, you also had the right to ask to be transferred to another facility for your care. I'm sorry anyone has to go through what you did for something as innocuous as wanting to be informed about your care and treatment plan! That was a doctor who simply didn't feel like dealing with his patient.


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10 Oct 2007, 5:08 am

It just goes to show that if people feel a bit intimidated by someone who is obviously very knowledgable, rather than engaging with them to share in this knowledge (and doing their own research and reading to learn more) they would much rather just kick you out.

They find it easier to kick someone out than admit that they just don't know all the answers!



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10 Oct 2007, 6:24 am

Siuan,

I am just going to take a wild guess and place my bet on you having asked a few questions that one, or more, of the "experts" couldn't answer.

You know a lot of the experts on internet forums are phoneys? Really, it is just too easy and too tempting for some kinds of people. Somebody like you catches them out...often without realising.

M



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10 Oct 2007, 6:43 am

EvilKimEvil wrote:
When I was in the hospital with pneumonia, I asked the doctor a question about my treatment. I thought it was a pretty normal, harmless question. I think I asked why he had decided to give me a certain drug or do a certain test. I wasn't feeling anxious; I was simply curious because medicine is also one of my main interests. He didn't even answer my question. He just said, "All right, I'll get you something for your anxiety." Then he left without giving me a chance to explain that I wasn't anxious. From then on, I was forced to take valium four times a day. When I got home, I went through an unpleasant withdrawal including insomnia, depression, and anxiety.


You were FORCED to take valium? For asking a question? You should have SUED! A LOT of doctors almost WISH to give away perscriptions, etc... Some get allowances or fees. Also, some are just popular or "quick fixes". Ever look at some of the magazines in the waiting room? I used to read some targeted towards doctors. SCARY! I mean at how they downplay side effects, misunderstandings, etc... So maybe the doctor didn't want to admit he was PAID to do it and/or he simply read it someplace and/or it was just to shut you up, like the valium was!



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10 Oct 2007, 7:38 am

It took me a long time to realise it but much of life is nothing but myths. Doctors especially like to give the impression of ominiscience.

My NT husband once was in hospital on a regular basis for dialysis following kidney failure so he became quite knowledgable about how it should be done. After a while, he was being treated by poorly trained staff and complained about it. The next thing he knows, a psychiatrist is sent to see him ! !



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10 Oct 2007, 8:14 am

*stunned and outraged*


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KristaMeth
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10 Oct 2007, 11:53 am

EvilKimEvil wrote:
When I was in the hospital with pneumonia, I asked the doctor a question about my treatment. I thought it was a pretty normal, harmless question. I think I asked why he had decided to give me a certain drug or do a certain test. I wasn't feeling anxious; I was simply curious because medicine is also one of my main interests. He didn't even answer my question. He just said, "All right, I'll get you something for your anxiety." Then he left without giving me a chance to explain that I wasn't anxious. From then on, I was forced to take valium four times a day. When I got home, I went through an unpleasant withdrawal including insomnia, depression, and anxiety.


Wow, that just... sickens me. I hate doctors.


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siuan
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10 Oct 2007, 12:18 pm

mechanima wrote:
Siuan,

I am just going to take a wild guess and place my bet on you having asked a few questions that one, or more, of the "experts" couldn't answer.

You know a lot of the experts on internet forums are phoneys? Really, it is just too easy and too tempting for some kinds of people. Somebody like you catches them out...often without realising.

M


Though I'm pretty sure most, if not all, were legit experts in this case...yes, I had questions the experts could not answer. One of them kept saying "this is excellent research material" and sometimes "research on this isn't available or is in process". Often, if I have a question I couldn't find the answer to, it's because one doesn't exist yet. So yes, you're right. People find me either highly annoying or highly interesting for this trait, nowhere in the middle, it seems.


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siuan
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10 Oct 2007, 12:23 pm

dosh wrote:
It took me a long time to realise it but much of life is nothing but myths. Doctors especially like to give the impression of ominiscience.

My NT husband once was in hospital on a regular basis for dialysis following kidney failure so he became quite knowledgable about how it should be done. After a while, he was being treated by poorly trained staff and complained about it. The next thing he knows, a psychiatrist is sent to see him ! !


I see things like this and I am SO thankful I have good doctors. Your husband wasn't being a good little sheep (i.e. following the orders and procedures regardless of what was going down), so they tried to knock him back in line. Awful.


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10 Oct 2007, 12:58 pm

It could have been the result of any number of variations, the mod being threatened, time to move on, etc.etc. Whatever the reason, the lessons need to learned. Sure it hurts. Been there, done that and it's the ego that rings the bells and whistles about poor me and wtf did they go ahead and do that to ME. How dare they.

But, the truth is - as unpopular as this may sound, it's all for the best and for the learning involved. You just brush yourself off, glean the wisdom and move on. Maybe using more tact, flexibility in the future.

~*~



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10 Oct 2007, 1:16 pm

siuan wrote:
EvilKimEvil wrote:
When I was in the hospital with pneumonia, I asked the doctor a question about my treatment. I thought it was a pretty normal, harmless question. I think I asked why he had decided to give me a certain drug or do a certain test. I wasn't feeling anxious; I was simply curious because medicine is also one of my main interests. He didn't even answer my question. He just said, "All right, I'll get you something for your anxiety." Then he left without giving me a chance to explain that I wasn't anxious. From then on, I was forced to take valium four times a day. When I got home, I went through an unpleasant withdrawal including insomnia, depression, and anxiety.


I've encountered doctors like that. I've left hospitals for that reason. First of all, you have the right to refuse a particular treatment and demand better care. Second of all, you had the right to have your questions answered, or demand another doctor to answer them. If all else failed, you also had the right to ask to be transferred to another facility for your care. I'm sorry anyone has to go through what you did for something as innocuous as wanting to be informed about your care and treatment plan! That was a doctor who simply didn't feel like dealing with his patient.


They told me that if I left or didn't do what they told me, my insurance wouldn't cover any of my treatment (which cost over $30,000!) because I would be "going against medical advice". Fortunately, I finally got to see a couple of specialists. They treated me better and answered my questions, but they didn't have the authority to discontinue the valium. Some of the nurses were sympathetic too. Apparantly, most of the patients at that hospital are elderly and too sick to communicate effectively, so some of the staff have gotten used to doing whatever they want without having to answer questions. What's possibly worse is that I had asked the paramedics to take me to that hospital in order to avoid one with a worse reputation.

I appreciate the information, though, especially since you're obviously knowledgeable in that area. Are those national laws? Or medical codes of ethics? Do you think they might have been exagerating about the insurance issue?