Doctors want you to trust them but don't trust you

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mrspotatohead
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14 Jun 2013, 2:08 am

Because I have a difficult illness, I have had to see a lot of doctors, and I'm still seeing more. I usually tell them right away anymore that I can't just trust them because I have been let down so many times by so many doctors now -- what do they do next? Give me reason not to trust them by not being honest with me and assuming things about me without actually asking, or they do ask something only to assume the opposite of whatever I tell them. I am really losing hope, and my husband is telling me that I am not supposed to be honest with my doctors because they might have pride issues about me actually knowing a few things about my condition (such as what diseases and disorders might be good to test for)... while other sources tell me that I should be completely honest with my doctors and do my own research and "be my own advocate." It's so confusing. Has anyone else figured out doctors yet?

My psychologist at least is trying to find me a consult to another psych who can assess me for an ASD since I haven't been assessed and still have to tell doctors that "I don't know what exactly you want from me because I *think* I have an ASD." At which point I must explain that ASD means "autism spectrum disorder" and is the new terminology being used.



mrspotatohead
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14 Jun 2013, 2:44 am

Apparently, I suck at making topics and everyone is very bored with me.



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14 Jun 2013, 2:59 am

NTs know how to get their way without hurting any egos in the process that might turn against them. This is extremely important with doctors. I'm a total failure at it, I've no idea how NTs do it.


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mrspotatohead
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14 Jun 2013, 3:00 am

Moondust wrote:
NTs know how to get their way without hurting any egos in the process that might turn against them. This is extremely important with doctors. I'm a total failure at it, I've no idea how NTs do it.


Well, then, it's good to know I'm not alone. I just wish the doctors would understand autism spectrum disorders better...



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14 Jun 2013, 3:16 am

I also suck at that and have no real answers. I haven't been to a doctor in 3 years partly due to that (which is bad as it might trigger a review of my SSDI status).

The best I figured out was to pretend that I knew 50% less than I really did. I.e. "I've read, but am not sure, but... <fact x>." And, also going to a lot of doctors (people call it "doctor shopping" but what they hell else do they expect a person to do?).



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14 Jun 2013, 3:29 am

I guess that, especially in the US, the younger the doctor the less reactive he'll be to someone who's well-read. Older doctors are from the old school where the patient was supposed to be totally ignorant of anything, having had zero exposure to medical texts. But younger doctors don't know the world without the internet, they're used to people being a lot more involved in their treatment and having a lot more questions. They don't know otherwise. Same goes for psychotherapists - the older ones still (unbelieavably) say "I never heard about Asperger's and I don't see a reason why I should read up on it." while the young ones won't be caught dead admitting they don't have a clue.


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mrspotatohead
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14 Jun 2013, 3:39 am

Apple_in_my_Eye wrote:
I also suck at that and have no real answers. I haven't been to a doctor in 3 years partly due to that (which is bad as it might trigger a review of my SSDI status).

The best I figured out was to pretend that I knew 50% less than I really did. I.e. "I've read, but am not sure, but... <fact x>." And, also going to a lot of doctors (people call it "doctor shopping" but what they hell else do they expect a person to do?).


Yeah, I'm doing the doctor shopping, and I always claim not to know for sure because I know I don't know for sure... but the latest incident, well... somehow I ended up being evaluated for a drug rehab program for people with pain disorders even though I have been taking all of my medications as directed... and no one told me that's where I was going until I got there, and I didn't figure out why the stupid psychologist evaluating me kept asking me, "...so, do you often come up short on your prescriptions before their refill dates?" and then made me pee in a cup until several hours after the appointment and reading the brochure I was given when I left. The thing that confused me the most was that she told me they would "detox" me and would take me off all potentially addictive medications -- two of which are extremely important in managing my pain levels.

I even told her that I tried reducing one of the dosages to make sure it was needed -- since I hate taking pills to begin with -- and my pain had increased a lot, to my dismay. Plus, I don't merely have a pain condition -- that is, an MRI *has* shown the cause of my pain. So, it's real, and she said that the program would stress "not talking or thinking about our pain because that makes it worse" -- which would be like ignoring the elephant in the room (while walking around blindfolded in said room) for me if I were taken off all pain meds...



mrspotatohead
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14 Jun 2013, 3:42 am

I just wish they wouldn't waste my time so much because, with every wasted day while waiting to visit the wrong doctor again, my pain is getting worse.



TonyHoyle
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14 Jun 2013, 3:46 am

I find doctors get really annoyed when you know things about your own issues. I've learned the hard way to shut up, let them speak then work it out for myself later. Often I find the lower level (GP) doctors are clueless and just make stuff up to get you out of the office, whereas the consultants have real knowledge.

I've been blatantly lied to by doctors since I was a small child. They used to talk about things with their peers in front of me, then tell me the opposite, assuming as a child I was too stupid to understand what they'd been saying 5 seconds earlier. I *never* take what a doctor says at face value.



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14 Jun 2013, 4:02 am

mrspotatohead wrote:
Apple_in_my_Eye wrote:
I also suck at that and have no real answers. I haven't been to a doctor in 3 years partly due to that (which is bad as it might trigger a review of my SSDI status).

The best I figured out was to pretend that I knew 50% less than I really did. I.e. "I've read, but am not sure, but... <fact x>." And, also going to a lot of doctors (people call it "doctor shopping" but what they hell else do they expect a person to do?).


Yeah, I'm doing the doctor shopping, and I always claim not to know for sure because I know I don't know for sure... but the latest incident, well... somehow I ended up being evaluated for a drug rehab program for people with pain disorders even though I have been taking all of my medications as directed... and no one told me that's where I was going until I got there, and I didn't figure out why the stupid psychologist evaluating me kept asking me, "...so, do you often come up short on your prescriptions before their refill dates?" and then made me pee in a cup until several hours after the appointment and reading the brochure I was given when I left. The thing that confused me the most was that she told me they would "detox" me and would take me off all potentially addictive medications -- two of which are extremely important in managing my pain levels.

Ah geeze, it sounds like you've been labelled a "drug seeker" and are now considered a confirmed addict. That sounds horrible.

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I even told her that I tried reducing one of the dosages to make sure it was needed -- since I hate taking pills to begin with -- and my pain had increased a lot, to my dismay. Plus, I don't merely have a pain condition -- that is, an MRI *has* shown the cause of my pain. So, it's real, and she said that the program would stress "not talking or thinking about our pain because that makes it worse" -- which would be like ignoring the elephant in the room (while walking around blindfolded in said room) for me if I were taken off all pain meds...

Wow. If someone said that to me I think I'd have a hard time not saying, "that is the dumbest thing I have ever heard."

I don't know from experience (but was/am diagnosed with CFS and have read a lot of people's stories), but my impression is that medical people are scared out of their minds of the DEA, and as a result are extremely paranoid that any pain patient is really an addict. So, any slight misunderstanding can lead to being considered an addict, I think. And having a confirmed condition causing the pain isn't considered a way of ruling out addiction -- there are people with painful condition who do abuse their meds (though IMO doctors/DEA are way too worried about that and ought to err on the side of letting a few people be addicts so that dozens who aren't don't suffer needlessly).



mrspotatohead
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14 Jun 2013, 5:04 am

Well, like I said... I don't take more than I am supposed to, so the pee test ought to prove that (I hope)... then, they'll probably just tell me that I don't qualify for the program. I'm actually going to have my NT husband take me next time, if there is a next time, because my mom took me this time and she screwed it all up by going into great detail about how my dad is not only an alcoholic but also smokes weed a lot. I was so pissed at her because I answered the question just fine on my own with a simple and angry, "Yeah, my dad is an alcoholic," but she just *had* to put in her two cents about how he is a *lifelong* alcoholic and such... I am beginning to realize that she may have an extroverted version of an ASD because she didn't even pick up on all the extra focus on recreational drug use (which I don't do at all since it would hurt my condition -- although I did try marijuana medicinally perhaps a year ago, but it didn't work out because the smoke made me way too nauseous, even through a bong -- which I mistakenly informed her of, as it IS legal medicinally in many states, not realizing the b***h would keep asking me over and over again whether I'd had any recently -- come to think of it, she might need to have a random drug test herself considering how paranoid she was being). I am also considering having my regular doctor who prescribed the drugs call up there and let them know that not only have I not run out early on any of my meds, but I am actually running a bit behind -- which would confirm the part about me trying to lower my dosage before.



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14 Jun 2013, 5:07 am

mrspotatohead wrote:
Apparently, I suck at making topics and everyone is very bored with me.


The thread was created at 5 AM US Eastern Time on Friday morning, which is probably one of the lowest activity times for WP (a high US-based membership). I would'nt read anything into a lack of responses 30 or so minutes later.


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mrspotatohead
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14 Jun 2013, 5:08 am

Oh, man... I am SO doing that... I'm totally going to call that clinic today and ask them who I saw and then tell them that I think they should do a random drug test on her very soon "because she was acting very paranoid when I saw her yesterday." See how she feels when the tables are turned...



mrspotatohead
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14 Jun 2013, 5:09 am

AgentPalpatine wrote:
mrspotatohead wrote:
Apparently, I suck at making topics and everyone is very bored with me.


The thread was created at 5 AM US Eastern Time on Friday morning, which is probably one of the lowest activity times for WP (a high US-based membership). I would'nt read anything into a lack of responses 30 or so minutes later.


I know. I was/am just having one of those days...