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gee_dee
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16 Oct 2016, 4:15 pm

Anyone else feel that medical professionals don't seem to "bother" with you as much because you're on the spectrum, or simply put everything down to AS? The reason I'm posting in the women's section is that I sort of have a niggling suspicion that being female might be a factor here...

The last few appointments I've had with my GP I've tried to articulate that I have depression (my mood took quite a nosedive, for various reasons, a couple of months ago), but all they ever did, if anything, was suggest going back on an antidepressant which I'd already told them didn't work out for me. I was only ever going to go back on that particular one as a last resort, as the withdrawal effects were horrendous, but I wasn't that desperate (yet) and wanted to at least see if they'd suggest any other type of medication.

I tried asking and they told me to ask my new psychiatrist, who already has a track record of ignoring things I say (but at least they haven't yet started giving me lectures like my old one did) and also completely misinterpreting my body language (always notes - with surprise! - that I "never make eye contact" and that I'm "well presented and clean", as if they expect their patients to be bedraggled messes all the time :? ) and the last time, noted my mood as "euthymic" - this was when my depression was particularly bad but was just barely managing to function "normally". It's beginning to feel now that they're being willfully obtuse, to the point where I'll have to start making a big scene in order to get ANY treatment. Oh but then I'd probably fall into the "difficult patient" stereotype, wouldn't I...? Now I'm in a Catch-22 situation where, if I want anything to change, I'll have to go through either one of those people, and I just can't face doing that again.

Also, incidentally, I've been having extremely irregular periods, and my most recent one was nearly three months ago. I've been to my GP twice about this - and it's actually very hard for me to go to the doctor in the first place because I hate feeling like I'm just an attention seeker - and all they did was suggest I go back on the pill. No attempts at diagnosis or anything. I'm freaking out about early menopause and possibilities like PCOS (it runs in my family - my non-AS sister had the exact same symptoms and got a pretty much on-the-spot diagnosis) but it's almost like they just want me to shut up and go away :(

They ALL know about me having AS, so I'm now wondering if, after a certain point, they just think "well that's what must be wrong"?



wilburforce
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16 Oct 2016, 6:50 pm

I wonder if it could be hormone-related? Or if a hormone imbalance could be contributing to your mood problems (you mentioned depression)--if your periods are irregular that could be an indication of hormonal imbalance. Especially as you have a family history of PCOS (which is hormone-related) I would go to either your GP or OBGYN if you have one and ask them to run tests on your hormone levels and address that, and see if getting your hormones balanced (if that is an issue) helps with the depression.

I do think as women doctors are less likely to hear us, or to see us as accurate self-reporters, especially those of us who have mental health issues of some kind (I've had this issue before when seeing doctors that don't know me already and just assume I can't observe and report changes in my own body or health accurately because I am autistic, bipolar, and female.) Once I've had a doctor for a while they usually catch on that I am rather fastidious about noting changes in my body and health and conveying that information to them and they will listen carefully when I self-report because they know they will get useful and accurate information from me--that is, if they are good doctors they will. Bad doctors are often bad listeners in general who never take any of their patients seriously or trust anything they say because they assume we are all idiots.


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gee_dee
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16 Oct 2016, 7:13 pm

It just feels like having AS and having XX chromosomes is a double-whammy :?

Strangely enough it never occurred to me until very recently that you had to ask them to do every single thing. I assumed that, if it seemed like something in particular was wrong then they'd at least suggest it before proposing some diagnostic testing, to rule the thing out if nothing else. I didn't realise that it was up to the patient to chase up and, effectively, self-diagnose...



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16 Oct 2016, 7:22 pm

gee_dee wrote:
It just feels like having AS and having XX chromosomes is a double-whammy :?

Strangely enough it never occurred to me until very recently that you had to ask them to do every single thing. I assumed that, if it seemed like something in particular was wrong then they'd at least suggest it before proposing some diagnostic testing, to rule the thing out if nothing else. I didn't realise that it was up to the patient to chase up and, effectively, self-diagnose...


It shouldn't be, especially when a simple test can rule something out, but unfortunately it often is the case. We have to trust our own knowledge of our body and any changes in it, and convey that trust in our own perception to our doctor/s.


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gee_dee
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17 Oct 2016, 10:23 am

Indeed. A few years ago I got tested for hypothyroidism and it came back "borderline" but apparently UK standards of what qualifies as borderline actually fall into the "low" category in the EU and possibly elsewhere. I didn't qualify for treatment as a result so I just started taking my own iodine supplements and it's improved slightly since then.



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17 Oct 2016, 4:33 pm

gee_dee wrote:
Strangely enough it never occurred to me until very recently that you had to ask them to do every single thing. I assumed that, if it seemed like something in particular was wrong then they'd at least suggest it before proposing some diagnostic testing, to rule the thing out if nothing else. I didn't realise that it was up to the patient to chase up and, effectively, self-diagnose...


Yeah...I figured this was just in the US, with the changes we've had here to the healthcare system, but sounds like it is happening elsewhere too...doctors don't really do much anymore except what you specifically ask them to. A lot of doctors won't hardly even do a physical examination anymore. On the other hand, they tend to take it as arrogant if you tell them what you think you have or want to be tested for.

I heard about a guy who is retired military and went to a veteran's hospital for a check up. The doctor did practically nothing except ask a few questions and fill out some paperwork. The guy got irritated and asked the doctor, aren't you going to examine me?! And being retired military, felt like he was entitled to better treatment than that and complained to someone who I guess he thought could pull some strings for him. The result was that because he got irritated and dared to question "The Doctor", he got recommended for a mental health evaluation.

I think these days, pretty much anyone gets dismissed easily. It's best to take your health into your own hands as much as possible.



SerinaSings
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17 Oct 2016, 4:56 pm

I've had very irregular experiences with doctors throughout my life. Some have really listened to me and worked with me to figure the situation out, and some have just dismissed me out of hand or suggested meds and seemed off-put when I refused the meds and asked for something else or asked more questions.

It might be an AS thing, I don't know, but it could also just be those doctors. It might be worth seeking out a new doctor and therapist that you feel will understand you better. That can be a hassle, and may take some time and a lot of anxiety before making phone calls or going to visits, but long-term it might be worth dumping your current providers. Remember, they work for you!



xile123
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17 Oct 2016, 5:28 pm

I've never had this issue with health professionals (99% of them have been very kind to me), I find its family members and acquaintances that are the dismissive people.



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17 Oct 2016, 6:34 pm

I get dismissed by doctors. I do not like them and I generally freak out and go mute in their offices. I always have to have a list with me to do my speaking for me... plus I always space out what my symptoms are anyhow. Not that my lists help me out. I had to switch doctors once and the previous doc found out I had scoliosis causing nerve damage. I had on my list that I had that, but my medical records had not arrived yet and the new doctor looked at me sitting there and told me I was wrong and did not have either of those. *blink blink* yeah... those lying x rays and emg's... bloody hell... who lies to their doctor about that crap. Dumb***.

I know though that I do not help myself due to my pain tolerance. I often fail to be in the appropriate amount of pain for what is going on with me. I once needed emergency surgery because I let something go too long because I did not notice there was anything wrong with me.


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17 Oct 2016, 7:39 pm

xile123 wrote:
I've never had this issue with health professionals (99% of them have been very kind to me), I find its family members and acquaintances that are the dismissive people.


The difference could be related to the fact that you are male. This thread is in Women's Discussion btw, so it's not really necessary for you to pipe up and say these issues that we women are discussing here don't apply to you.


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(Note to Moderators: my warning number is wrong on my profile but apparently can't be fixed so I will note here that it is actually 2, not 3--the warning issued to me on Aug 20 2016 was a mistake but I've been told it can't be removed.)


gee_dee
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17 Oct 2016, 8:17 pm

dianthus wrote:
gee_dee wrote:
Strangely enough it never occurred to me until very recently that you had to ask them to do every single thing. I assumed that, if it seemed like something in particular was wrong then they'd at least suggest it before proposing some diagnostic testing, to rule the thing out if nothing else. I didn't realise that it was up to the patient to chase up and, effectively, self-diagnose...


Yeah...I figured this was just in the US, with the changes we've had here to the healthcare system, but sounds like it is happening elsewhere too...doctors don't really do much anymore except what you specifically ask them to. A lot of doctors won't hardly even do a physical examination anymore. On the other hand, they tend to take it as arrogant if you tell them what you think you have or want to be tested for.

I heard about a guy who is retired military and went to a veteran's hospital for a check up. The doctor did practically nothing except ask a few questions and fill out some paperwork. The guy got irritated and asked the doctor, aren't you going to examine me?! And being retired military, felt like he was entitled to better treatment than that and complained to someone who I guess he thought could pull some strings for him. The result was that because he got irritated and dared to question "The Doctor", he got recommended for a mental health evaluation.

I think these days, pretty much anyone gets dismissed easily. It's best to take your health into your own hands as much as possible.


It's shocking that can even happen to a veteran. It's bad enough with anyone but someone who has acquired the injuries they're going to the doctor for in the first place through putting their very lives on the line...

And they mock patients who consult "Dr Google" :?

I really have no idea how to "doctor" anymore...



SerinaSings
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18 Oct 2016, 12:50 am

gee_dee wrote:
And they mock patients who consult "Dr Google" :?


My mom's hearing specialist told her to go home and consult "Dr. Google." I was there (because she can't hear).



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18 Oct 2016, 1:23 am

I hate going to the doctor; mostly I've had similar experiences of being dismissed out-of-hand. I think this is more do do with being female than being autistic, because it happened long before my diagnosis.

I remember one time I went in about a knee injury (which still persists) and without even looking at my knee, the doctor said "no, you're fine, there's nothing wrong with it". I was absolutely stunned; it wasn't just arrogant, it was surreal. That was before I knew I had AS, I got the impression they weren't listening because I was a teenage girl. To highlight this, my brother has been to the same doctor for physical injury and illness, and been offered tests, treatment, medication, you name it.

When I saw my GP to request an autism assessment, he straight-up told me that I was wrong. I said sth like "I know a lot of people self-diagnose and not all of them are correct, but I've done a lot of research and been referred here by a therapist, and I think an assessment would benefit me." To which he sneeringly said "hmm, yes a lot of people do wrongly self-diagnose, and you're probably one of them". It took so much mental effort to go there and ask, and then to have to fight to be listened to.... :evil:



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18 Oct 2016, 1:44 am

Perhaps it's better to only see female doctors?


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18 Oct 2016, 2:20 am

Hell, yeah! A lot of doctors are dismissive, and I do believe that female patients have it worse. It may have something to do with the fact that women seem to suffer more from chronic, complex problems, which are difficult to diagnose, which again makes it easier for the doctor to treat it as imaginary.

One thing that has happened to me several times: I go to the doctor for back trouble and mention, among other things, that one of my shoulders droops a little. The doctor then goes on to tell me that my shoulders are perfectly even. Then, whenever I see a new physiotherapist or massage person, they tell me "Did you know that one of your shoulders droops a little? I'll see if I can manage to balance it."

It's all about finding a doctor that actually listens - but those are rare. My present doctor accepts, is in fact happy about me writing a health log. I will keep doing this for the rest of my life.


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xile123
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18 Oct 2016, 4:27 pm

wilburforce wrote:
xile123 wrote:
I've never had this issue with health professionals (99% of them have been very kind to me), I find its family members and acquaintances that are the dismissive people.


The difference could be related to the fact that you are male. This thread is in Women's Discussion btw, so it's not really necessary for you to pipe up and say these issues that we women are discussing here don't apply to you.


All I see is fakers complaining that health professionals are calling then out on their BS.

Yes of course many women have an ASD but there's a reason why males are diagnosed more often and its not "da patriarchy", its actually due to the fact males are 4 to 5 times more likely to have any kind of developmental disorder, not just with ASDs.