taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
Alex. Not ALL psychiatrists or psychologists fail to understand ME! Jesus Christ. You have absolutely no idea how hard some people have been engaging with ALL medical disciplines to better ensure we are taken SERIOUSLY!
It may be different where you are but I can speak as someone who has seen about 7 different psychiatrists and psychologists. I can say that ONLY ONE seemed to have a good understanding of what things are like for ME patients, none of the others had a clue what I was going throu at all. (I can say thou I didnt have any of those push me to exercise as GET and ME/CFS like CBT dont seem to be an "in" fad thing here in Australia with these psych health professions as it is in places like the UK BUT there was a COMPLETE LACK OF UNDERSTANDING on the degree that ME was affecting me and what I was going throu due to it. (I used to go to my psych appointment and was so sick I'd be laying the whole time on their couch and almost falling asleep so the other was doing nearly all the talking)
They couldnt offer me any of the support I needed as they just didnt understand it.. and hence tried then blaming other things on my stress at not getting the help I was needing in my general life to function... so I got hit with a borderline personality disorder diagnoses which is completely wrong as that is something .. A PERSONALITY disorder, one is supposed to develop as a teen not develop when over 30 years old. I was suicidal for the reason I couldnt cope as jsut wasnt getting the PHYSICAL help I was needing just to have the normal life basics. I even got told by a couple of them that they couldnt understand me at all (one ended up trying to get advice from another).
I believe i had PTSD from ME (as I fit the diagnostic criteria.. neighbours even rang the police one night as I was screaming in my sleep) but they wouldnt diagnose with it as they couldnt understand how one could get PTSD from ME and how others are treating you around it. The ME HAD almost killed me and with the lack of physical support.. I was scared it would end up killing me.
I was actually getting flashbacks at times of very bad ME incidences in the past. So not only did they give me a false diagnoses due to their lack of understanding (I'd already had a ME/CFS diagnoses given to me by three different CFS specialists so this false diagnoses just ended up on top of the other) but they also MISS diagnosing PTSD due to their lack of understanding of the ME/CFS. One comment one of them made was "You have to have real trauma to get PTSD". So they wouldnt try to treat me for PTSD and wouldnt give me any psych drugs due to their "borderline personality disorder" diagnoses.
My GP I had then didnt believe I had mental health issues due to what the psychs said and after sending me to psych after psych who kept saying the same thing (they'd jsut go by the previous wrong diagnoses of borderline personality disorder).. then my GP ended up ignoring me when Id go to him about collasping (and I dont think he believed in ME/CFS anyway. He ignored the letters my 3 CFS specialists sent him). The psychs.. undermined my whole medical treatment so I didnt get any help at all and just keep telling me that I had to learn to control my mood issues I was having (something I truely couldnt help at all thou I tried so my failed attempts to control my severe emotional states just made me feel even worst).
So I can say in my case the psychs .. 6 out of 7 of them.. were more harmful to me then of a help. (I still do see one occassionally.. the understanding of ME one thou I havent seen her for over a year. She helped me greatly with the trauma I'd had over bad doctor treatment and their negect of me. The psychs ended up making my CFS specialist say.. well deal with the BPD first and the ME/CFS later.. my other two CFS specialists retired.. so I ended up then with no one helping the ME/CFS and NO ONE treating my symptoms as the psychs had influenced how the CFS specialist thought). It was hell.. I went throu severe FM untreated, severe insomina (not able to sleep for days on end) untreated etc etc. Over 7 years of untreated hell. (I now days have quite a few prescription drugs from anti nausea drug they usually use in chemo patient and other drugs for my symptoms and are hence in a much better mental health state due to not being ignored and not left in severe suffering.. and on top do now get a some gov supported home help to help my basic needs which are affected by ME, be met).
*Note.. It was after YEARS (4 years? I was going weekly at one point) of psychs.. I found out thanks to finally a better specialist who did more testing.. we found out that I had hyperinsulinemia which causes my severe (some times suicidal) mood swings which had lead to the false borderline personality disorder. I also have premenstral dysphoric disorder. So it makes sense that all the psych treatment I had didnt help at all as they were trying to treat disorder I didnt even have. My allergist has me now on a very strict low carb diet for mood control. I think the fact I have MCS due to the ME is what causes me to respond so extremely to abnormally high insulin spikes I get (I get well over 3 times normal amounts of insulin when it spikes).
If you hear others talking of psychs bad.. this is probably why.. LOTS of us have had bad experiences due to psychs not understanding ME or our issues and they arent looking enough for reasons, the other medical conditions which go with ME and ruling those out for causing symptoms but instead giving wrong psych diagnoses which they then find they cant help at all (if they arent blaming the person for the symptom) as it is the wrong diagnoses..
We need desperately to get more people on board and not less. All this "harassment" and "scandal" has achieved is to undermine our very importance.
I do agree with that
Yes. It takes time. It is slow. It is bloody frustrating. People want to move at 10,000 miles an hour in a direction they deem is more important, that changes day-by-day but we have to work with the system - AND ENGAGE.
Do u ever wonder why some people are so desperate for change? and as you put it wanting to move at 10,000 miles per hour. Its cause many of us are fed up with being treated badly for so very long.. You sound like you havent been long term sick eg sick less then 7-10 years.. if u were a long term, severe person, I think you'd more understand peoples desperation for things to be changed. Many of us have been sick 15-30 years.. and arent happy with the no progress and the moving at snails pace, we've already lost a HUGE amount of our lives. We'll be dead before things improve if it continues at the rate we've seen.
If u think Im exaggerating in my medical situation (cause u mentioned about people "exaggerating" in one of your posts) and what Ive gone throu with it.. Im VERY WILLING to publically start putting copies of various doctors/psychs letters/reports which were written about me on this thread which proves just what Im saying about psychs and us and how they are harmful to many of us... and u will see just how many I saw and the things that were wrongly said. pm me if u think im exaggerating and want me to do this publically just to prove to you just what Ive been throu (in case i miss seeing your post). Even my excessive thirst due to POTS was put down to possibily being due to a mental health cause (that one in which people have a psychological thirst... that happened due to all the psychs influences on my CFS specialist.. He had never heard of POTS and wouldnt research it)
Even if you or I raise funds for a 'biobank' or independent research institute. What are you going to research? Why? What happens when it fails? You claim to know how science operates - so you know how slow this goes and how the failure rate is high. There is no simple or obvious solution to ME. Hell, we are still unsure as to what ME is - after 50 or more years!
There are LOTS of things which need to be researched with our illness... ME/CFS research has been quite "fragmented" with often studies abnormalities not followed up with bigger ones or the findings not studied again in a way to go deeper into whatever was found.
Sadly I think more was known probably about ME back before the 1980s... it even had its own scientific journal (Im not refering to the old CFS journal but of Australian/New Zealand ME journal before that one)