I could scream. I just received a copy of my Primary Care Doctors notes from my most recent visit. Why does it seems many/most doctors word things and take things out of context and make you seem like pysch when it's not? Is this done with every condition or only some such as ours?
Probably not, if we had something like cancer I dont we'd have doctors trying to psychotize (it that a word?) our illness.
Before I had ME/CFS, my doctor in San Francisco referred me to the emergency room because she was closed. The doctors in the ER were questioning me, how many times have you been to the ER, as if I was a person that liked going to the ER. Thankfully I've only had to go a few times in my life, but seriously what if I had to go more because the doctor's office wasn't open and the concerns warranted it?
for that reason I only ever go to the ER if Ive had to go by ambulance as Im afraid they will otherwise play down how I am so now only go there if extremely sick.
I have been by a previous dr (though not at hospital), been treated before like I was an attention seeking patient so due to this I've often avoided going to hospital when I should of done so (I even had a borderline personality disorder diagnoses slammed on me in which I think was partly due due to not being believed Im very sick.
My last decent dr was having to try to encourage me to call an ambulance when I need to do so.. Ive risked my life at times by not calling ambulance when I should of done eg when getting a severe allergic reaction and had my mouth swelling up all cause I try hard to avoid having to go to hospital, other time I was on the floor in a heat wave unable to get drinks or go to the loo for near 24hrs but was in no mood to call an ambulance due to how I can be treated at times so instead just went to sleep in the heat wondering if I would die.
Another time I was coughing up blood for about 5 days and didnt ring ambulance or see a dr (fortunately I did recover from that severe cough but it was probably double pneumonia on that occassion to which Ive been in hospital on a drip before with).
I do still ring ambulances and times and do go to hospital often but if Im not mentally/emotionally strong enough at time which I need to be due to how they can be around ME/CFS, I still sometimes dont ring one when needed.
I feel like I need to be so guarded with every word that comes out of my mouth at the doctors visit. It's hard to do when I'm so fatigued, fuzzy headed and pushing to make as much happen as possible in that visit because I can't follow up . And on top of that try to respond to any way that they are suspecting or insinuating things that aren't true about me.
I know exactly how you feel about it. I have no patience left to deal doctors insinuating things though it still happens. When something like that occurs I will no longer ever go back to that dr. I think of it this way now days..
you are paying the doctor to do a service for you..so how dare they go and insult you!! We really shouldnt have to put up with that.
For me to try to correct the notes would take too much explaining which could/would probably make me look even worst. There's so much there in the notes that I find troubling and that will cause me problems yet explaining will make me look bad too with some of it. I have too much other in my life that can't be tended to as it is.
same issue here. I even got a wrong diagnoses of borderline personality disorder in my records now on top of everything else.. and Im too ill to go and see specialists to get this wrong diagnoses off so it just adds to the crap there which further adds to the likihood that I can end up being treated badly.
Thou mistook Aspergers (which I now do have an offical diagnoses for but didnt at time) and ME/CFS, food and hormonal issues which were giving me mood swings due to hyperinsulinemia (which wasnt known I had at time), premenstral dysphoric disorder (PMDD which I do have a diagnoses of) and situational depression and feeling suicidal at times due to how sick I are over having the personality disorder of BPD. All cause they dont understand my ME/CFS and that that can make some of us feel suicidal at times.
So now due to the BPD label, Ive been accused at times of attention seeking. Its sad that doctors incompendence and missing the right disagnoses or lack of medical understanding can lead to someone being given a wrong diagnoses which will greatly affect the care they get.
My doctor wrote these things that are factually wrong, and other is subjectively wrong. It all makes me look bad. I also find doctors notes are written in a way that aren't flattering to the patient. Is this just the way it is taught in med school? I know legal language can be like that, too - "allegedly", "claims".....
I have the Tanya "allegedly" claims written in my files too and I find it insulting that we go to medical people baring all and are then hit with crap like this. I wish they'd go and vertify the stuff I tell them about situations which have happened to me rather then make comments like that.
I hate that the words I use are then put in quotes in the notes.
I have stuff like that through my medical files and I hate the quotes too which are always done in a way to make me look bad and exaggerated out of context. Its like they choose to grab one single sentence out of everything I said and make a huge thing about it. Like you, I have a lot of trouble expressing myself and often struggle to even get my words right. The last thing I need to be concerned over is having accidental words used against me or something I said put out of the context it was in.
and what is worst is I need to be super careful not to cry at appointments as if I do, that is always taken out of context too and often another reason put onto why it happened then really why it occured. I had one dr (actually it was a psychriastrist that the hospital had me see one time I was feeling extremely depressed over my situation) that accused me of trying to get attention cause I started crying when talking to him. I still feel upset over this to this day and unfortuantely he still works at my local hospital.
It was so horrible, to be feeling so upset (I was actually feeling suidical) and then to be blamed for my crying he didnt believe I was really upset anyone except this sadist psych I think could of seen I was genuinely upset so I wont now ring an ambulance or allow someone to ring one if Im feeling suicidal as I could get this dr and end up being ill treated and just kicked out of hospital with no way home. I'd rather be left to die now then end up having to put up with abuse from that dr.
I so hate having drs see me when Im alone due to all this. Its bad enough trying to keep in mind what Ive made the appointment for and focusing on that then having all this other stress happening due to being worried about what drs are thinking etc.
anyway, very sorry to hear that you are experiencing this like so many of us do who havent got good drs for this illness.
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