talking to doctors?

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talking to people can be hard...talking to doctors is harder. (well, they're people too, but...y'know) i'm 38 and just found out i have a heart problem which could prove to be serious. while i was in the ER a doctor asked me to rate my pain (chest,back & left arm...) on the infamous 1 to 10 scale. i told him to give me a minute because i hadn't been paying attention to my body. that would have sounded a lot weirder if they hadn't given me morphine...but it's something i would have said whether i was drugged or not. it made sense when i said it. it still does, because i know what i mean. but...this is complicated. i have issues with medical stuff that goes deeper than i care to delve into here.
right now, i'm just wondering how i can really take care of myself the way i'm supposed to be when it is a serious strain for me to talk to medical professionals. i say stuff that comes out weird because i'm nervous, or i do the "deer in the headlights" thing and just blink at them. it looks like i'm going to be spending a LOT of time talking to doctors...HOW?

I know what you mean. I've had a few very bad instances of this recently.

That is such an annoying scale of pain tolerance. I had the same problem explaining my pain tolerance.
I read a blog recently about this...look up
prerainmanautism.blogspot.com/

I have had some serious health issues in the last 20 years or so (so far, everything has come out ok) that have sort of forced me to come up with a proactive plan to deal with doctors. And under most circumstances, especially with the usual doctors I see, it works fine. However, if it is a new doctor with lousy people skills (doesn't listen)or I am in significant pain, I am often kinda struck speechless (deer in headlights syndrome). I make a list of concerns and questions beforehand, but if the doctor refuses to follow thew script, what can you do. Fortunately, our plan has email with doctors (for those questions I forgot to ask) and second opinions (takes a while, but it has saved me one futile operation on my foot). I'd be SOL without these. Since folks in my family have paradoxical reactions to many classes of meds, this is serious stuff for me...

I've had trouble talking to doctors.

A lot of trouble with doctors comes because they assume you don't want to know more than "will this help?". You have to pretty much badger them (or, many of them anyhow) if you want to be completely involved in your own treatment. That goes triple for psychiatrists.

I assume it's even worse if you are under 18 or obviously disabled.

it IS worse if you're disabled...i flatter myself that i'm not incredibly obvious, but once they ask what meds i'm on and lithium & klonopin are among them...i recently (in june) went to two different ERs with a seizure cycle that wouldn't go away. at neither was i treated, it was assumed that it was my mental illness that was the issue. never mind that my pulse stayed near 200, my BP was 175/ 110, my oxygen saturation levels were in the 80s without added oxygen...i had a mental health history and was acting oddly, therefore, the problem was psychiatric. it was absolutely humiliating.

i also had a friend die three years ago because the assumption was made that it was mental illness speaking and not physical. he'd had an appendectomy, and kept going back to their ER reporting pain for the three weeks afterward...until he died. they told him they would not give him pain medication. they asked him when was the next time he would see a psychiatrist. they sent in someone to evaluate him for depression. and he died of massive sepsis at the age of 29. joe was NT, so it was the filter in front of their brains and not the signal he was sending out that was at fault. what am i supposed to do when i'm trying to fight through their filter with my eccentric signal?

i called the doctor's office like the ER folks said to try to get in to see him sooner than the eleventh, telling them (as the ER doc told me to) that since i had begun experiencing angina and was suffering femoral nerve damage, they would like him to make time for me...blah blah blah. they did. they'll see me on the ninth... ummm...it was like the third or the fourth when i called, i know he takes walk-ins...? i know i could just "walk in"...but i'm not really sure i can. i've done it before, but if i were really supposed to wouldn't the lady on the phone have told me to just do a walk-in if the ER said for me to be seen sooner? who's the ditz here, me or her?

This is very difficult for me as well. The worst thing is when they try to rush your responses when you're trying to mentally process their questions and then put your answer into words, which isn't easy for me because I have a completely visual mind, and, for example, if they ask me what a certain pain/sensation feels like, it's hard for me to know what to say because I have to visualize certain objects and the one most likely to make me feel that specific pain/sensation. I can't just give a perceptual description without the closest specific object to liken it to. And talking to someone in this manner, who I see once or twice a year at most, is much more uncomfortable than speaking the same way to someone like a family member or someone else I see every day.

Case in point, several years ago I went to a urologist for urinary retention when peeing and also going frequently. She only did one ultrasound before deciding the problem was all in my head. The ultrasound did come back clean, but looking back on it, I think it was the way I presented the description, and also my odd speech, that gave the impression that I was a headcase, not even considering the fact that this is how autistic people speak sometimes (she was aware of my diagnosis). She told this to my mom, who then told me to stop being a hypochondriac. Several months later, I came across a few medical articles on a drug I was taking at the time, and it turns out one of the side effects was urinary retention, which was such a simple thing that the urologist never stopped to consider. I went to my regular doctor with this, he took me off the drug, and the problem was gone within a week.

The best thing for me, I find, is to write down everything you want to discuss beforehand, even to the point of memorizing a script, if necessary. Just keep in mind that these conversations can become spontaneous, and it helps to be mentally ready to be able to deviate from the script slightly, like it is with most conversations in life. But at the very least, having a baseline of your thoughts ready should help, even if just a little.

Or if you have difficulty speaking at all, write down a very specific list: what symptoms, where are they, when they started, what they feel like, how bad are they, what makes them better or worse, and hand it to the doctor. You should write it at home beforehand, so that you have all the time you need to put your thoughts into words. It's concise and to the point, and it'll save valuable time for the appointment that would otherwise be spent putting the simplest thoughts into words.

If I was speaking to a doctor, and he asked me on a scale of 1-10, I'd give him my own scale. They usually can tell from that.

IE: a "1" would be: it feels like a dull, monotonous ache, but it's something I can deal with
a "10" would be: It feels like a sharp pain, doc, and it nearly blinds me. I can't take it any more (well maybe not THAT dramatic :-p) but you get the idea.

How does that sound?

Im pretty much straight foward with it when talking to the doctors. I assume that they are used to dealing with people with all kinds of problems so they most likely wont be judgemental. With taking my time with my answers and being honest it's not hard at all.

problem with pain is that it's so particular...wow, is that enough p's in one sentence?
migraine pain scale would be described differently than joint pain scale or the pain from my delightful new companion, angina.

thanks to the poster who mentioned writing it down beforehand and gave advice on how. i've done that before...basically handed a doc my "medical manifesto"...some have immediately dismissed me as a hypochondriac (why else would i write down all that? i must think too much about my health, look what i spent all that time doing!) others said they'd read it later (umm...that defeated the purpose)very few actually read it and used it as a jumping off point to ask questions. so maybe...

what if i yes, write it down, and allow for spontaneity, but tell them going in that there are certain things i will not leave without saying? know what those things are. does that sound workable? i'll have to work up the nerve...but if i do, does it sound like something a doctor would go along with, me saying: there are certain non-negotiable things we must cover before i leave?

I wish I could give you some good advice on this, but I really suck at this myself.

I tend to avoid doctors as much as possible as a result...everything I say usually comes out the wrong way or they are asking me to "please clarify" what I've said...and I find that most of the time I can't...I sit there an stutter like a broken record. Someone normally gets pi$$ed off in the process, either them because they loose patience with me..or me, because I always get misunderstood.

I really hate the "rate your pain game" ...my 3 could be their 10, or vice-versa...usually the former though, as I've always tended to ignore pain for the most part. I seem to not have the same "awarness" of my body that I see most people do.

As far as writing things down goes, maybe explain to the doctor that you're autistic and you tend to have difficulty putting your thoughts into words, so writing it down gets what you're trying to say across much better than speaking, and also that it will save both of you valuable appointment time that would've otherwise been spent putting thoughts into words. Some doctors may even think that you're doing them a favor by trying to save them time, and may treat you better as a result. If none of this gets through to their thick skull, find another doctor. You're paying for their services, not the other way around. If you feel you're not being serviced well, go elsewhere.

As far as telling the doctor that there are things that must be discussed, I don't have too much experience having to do that, so take this for what it's worth: if it were me, I would tell the doctor right at the beginning of the appointment that there are a few different things I need to talk to her about, and they're important enough that they need to be addressed today. But try to say it in a non threatening manner, meaning make it sound important but at the same time not jumping down the doctor's throat. And again, if there are things that you're more comfortable writing down, by all means do that.

I would tell the doctor that it's hard to talk about how you are feeling and ask them to be patient while you try to explain. Maybe you could write down how you feel before the appointment?

i always have problems with doctors that are not willing to hear the family medical history and test for things before they decide there is nothing wrong

lately i also keep having problems with doctors telling me that i do have aspergers and even telling mom and dad that i have aspergers and then when ask them to officially diagnose it they turn around and start saying that i just want to be sick and that there is absolutely nothing wrong with me to the point that they also try to tell me that i even fake having the symptoms that i get disability for and my disability diagnosis is nothing but symptoms and all i want to do is give a name to what is going on

does anybody have doctors do this to them

do what i and my somewhat paranoid but hypothetically NT(long story) brother do. buy a digital recorder and get them on tape telling you that you have asperger's. it's perfectly legal, the doctor doesn't have to know-as long as one party knows they're being recorded and it's not being used for illegal purposes. you know, so it's cool...handy loophole in the law, that.

i don't have an "on my record" diagnosis of asperger's because i was in my mid-twenties and already had been diagnosed with so many things my doctors were afraid it would actually screw with my disability if they added asperger's, which overlaps with most of what i'm diagnosed with "on the record". they were afraid that if at some point in the future social security did a re-evaluation (and they do them every so often), they might try to contest some of the other diagnoses on the basis that they were actually misdiagnoses of Asperger's. wouldn't sound so bad if you didn't know that Asperger's position in the DSM-IV and its descendants is precarious. if my primary diagnosis became a disorder that was not recognized in psychiatry's bible, then i would be just as impaired-but liable to lose my disability benefits. i don't know if that's what's going on with your doctors. but if they DO say you have asperger's, then they do believe it...and there is some reason they don't want to make it official. perhaps you could get them on tape confirming the diagnosis to you, then reveal the tape and ask them why they're saying two different things...or rather, saying one thing and then not acting on it in a consistent manner.

to make a long story short by skipping the stories entirely, yes, i've had doctors tell me i wasn't really sick. it's humiliating, but it's just a combination of they're not listening and we're not speaking their language. by that i mean body language even...telling someone i'm in hideous pain while i'm sitting perfectly still and calm, for example. not being emotionally affected as much as they expect, or seeming to overreact. unless their practice consists of a large number of people at several points along the autistic spectrum, just knowing your diagnosis isn't going to keep them from misconstruing what you can't help presenting. is that helpful at all?

on a slightly different note...has anybody here not been treated at all because they were misinterpreted by medical personnel? like me for the seizures, or like my friend joe, who died? joe wasn't autistic, but he had a mental health history. ever since he died, i've obsessed over the question of how many people with mental health problems-including ASD-have actually died because their physical health was overshadowed by misperception or straight-out bigotry. and then this june i was basically ignored at two different ERs when i was having a series of seizures, even though my vital signs were insane. my brother has run into some problems too...my brother is not normal. he's bright, he functions...but i swear he's undiagnosed asperger's though less severe than me, with the extra added attraction of being much more paranoid and angry. (but a totally incredible, creative, empathic guy.) and he's had some problems with medical professionals too. how bad is this problem, and how many lives has it cost?

I have major problems with doctors.

Doctors usually don't take me seriously and I've lost count of the times it's been indicated that it's just all in my head. I have had many health problems that were not obvious, simple or common and I guess I didn't put on enough of an emotional show to make the doctors realize how bad those problems were.

I'm awkward with doctors (as with other people), I don't make eye contact much, my speech is badly organized, I don't use body language, I either speak monotone or I try to use intonation but use it incorrectly, and when they ask questions I need a moment to think before I can answer. Doctors seem to think this means I'm faking it. They have been reluctant to do tests or really try to find root of the problem. They just tell me there's nothing wrong without even checking it first. That adds to the stress and makes me more nervous about seeing doctors, because I always worry I'm just going to be told one more time that it's all in my head.

Yes, I was not treated at all for several problems, some of which started when I was 8 years old and were not treated until I was 22 years old. Because doctors didn't take me seriously my disabilities, injuries and some longterm health problems went undiagnosed and untreated for a long time, until I finally found one doctor who took me seriously enough to have some tests done and found out what was wrong. By that time it was too late to treat some of those problems.

I only lived in the area where that doctor was temporarily though, so I can't go to him anymore and I'm really reluctant to see other doctors about anything if I can possibly avoid it. It seems to be pointless for me to see doctors. I don't know what I can do to make them believe I'm not making things up and get them to examine me properly or do the necessary tests.

I agree that it's scary and messed up how a lot of medical professionals ignore physical health problems of people with mental health issues, developmental disorders and such and just assume they are not real physical problems. I'm sure a lot of people are left untreated, but hopefully there are not very many serious cases resulting in death, like with your friend.