What is it like to be evaluated/diagnosed?

[Alice97]

I keep wavering back and forth between not wanting an official diagnosis of PTSD, and really wanting to know for sure. Part of the reason I don't want to is the thought of being evaluated and having to talk about all the stuff that scares me most would be incredibly difficult. I'm a person who feels a lot more at ease when I know what to expect -I hate surprises. That brings me to my questions.

To those who have been evaluated and were diagnosed with PTSD:

(1. Do the doctors/therapists who do the evaluation give you a definition of trauma? A lot of the websites I've seen online for PTSD define trauma as involving a life-threatening or physically threatening event. My concern is that they wouldn't consider emotional/narc abuse traumatic.

(2.  Was the evaluation process triggering? I really don't want to have a breakdown in the middle of it.

(3. How long did the evaluation take? I know this will vary considerably from person to person, but I'm just wondering if they just go through a few questions, or if it is a long, thorough process with lots of questions.

(4. Were you surprised about anything? Did anything happen you didn't expect, good or bad?

[radical]

Hi,
A quick reply,
I was diagnosed under the old criteria - sexual assault.  I can't answer your first question because the criteria for what consititutes trauma has changed.

Question 2.
Yes it is.  But it can be empowering and reassuring to just once, tell your story to someone who understands what you have gone through.  The right circumstances are important,  do your home work and research who you go to for a diagnosis.  There are still victim-blaming old-school psychiatrists around.  Avoid these people like the plague.  Being retraumatised is dangerous and damaging. Make sure you find a trauma specialist who knows how to help you with the feelings that come up.

Question 3.
I've been reevaluated a few times for insurance purposes (unfortuantely). The longest was about 3 and a half hours.  From my experience, average would probably be about  two hours for a first assessment.

Question 4.
Validation and respect can be surprising.  Detail is required, which makes the experience more real.  Don't expect that you can just give a brief, safe-feeling, overview that will allow you to stay somewhat detached from what you are speaking about.  It is a very personal and intimate experience, and the assessor needs to be very experienced, knowedgeable (specialist in trauma)  and trustworthy.

It can be reassuring to know that your experiences are the normal and predictable result of psychological injury.

[arpy1]

took me three goes to find a therapist who assessed me in what i felt was an informed, compassionate and sensible way. the first two were ok but they didn't turn out so well when i continued on with them in therapy.  the third is a consultant with the NHS and she  told me she was definitely on the 'same page' as me when it came to me being pretty sure i have cPTSD. the others didn't really get to grips with the definition of cPTSD, but with this person, that was the first time any professional apart from my GP has been so clear.  i guess becos she is just a bit younger than me and obviously up to date with her research.  i guess if i had felt the need with her i would have felt confident enough to ask for a definition, but not with the first - she was too scary.

it took about 2 hours. and i was exhausted afterwards, so that's worth noting. might be an idea to give urself the rest of the day off after it to get grounded again and get over the arousal.
all the assessments were triggering, yes. inevitable i'm afraid but especially the third lady was very affirming and gave me time to ground myself whenever i started to melt down. that was very helpful. also she didn't push me if i couldn't go on with a subject.  i didn't feel humiliated at all, and i was at the time in a pretty vulnerable state and very scared becos of the two previous bad experiences. she said it had really helped her to understand where i was coming from becos i had actually written a letter about those and had asked for it to be put on my file, so she had read that before my appointment.

that she was agreeing with me about the cptsd was a surprise and a relief. that she agreed that a simple 20 week 'course' of therapy was never going to cut it in terms of real recovery was also a surprise and a relief. i felt genuinely respected and believed and that she wasn't secretly thinking 'oh god, here's another one who thinks she knows what's wrong with her. i'm the one with the degree, after all' maybe that's me being paranoid, but i really have got that vibe from some professionals, especially the first one. 

don't know if this all is helpful to you but good luck with your decision making 

[Alice97]

Thank you radical - your answers to my questions were very helpful. I guess I was kind of hoping I could "just give a brief, safe-feeling, overview that will allow you to stay somewhat detached from what you are speaking about." But it makes sense that that wouldn't be possible. If I do decide to get evaluated, I will be prepared for lots of triggering, and try to set aside the rest of the day to recover.

And also thank you arpy1 - It's good to know that there are some therapists who believe in cPTSD, I'm glad you finally found one.

[arpy1]

unfortunately i found her and now i have to wait 18 months (nhs waiting list in my area) and may not even get her as therapist. sigh. i try very hard but i admit i am terrified that by the time my turn comes they will have pulled the funding again and it's no longer available...  i hope it's better where you are, Alice97, and that if you go for this you will be able to get the treatment you deserve as and when needed  

[Alice97]

unfortunately i found her and now i have to wait 18 months (nhs waiting list in my area) and may not even get her as therapist. sigh. i try very hard but i admit i am terrified that by the time my turn comes they will have pulled the funding again and it's no longer available...  i hope it's better where you are, Alice97, and that if you go for this you will be able to get the treatment you deserve as and when needed  

Ugh that's terrible     And thanks, I hope it's better here too.

[papillon]

  Hi Alice,

I guess one thing you may want to ask yourself is what you think you will gain from having a diagnosis?

From my perspective, finding a compassionate helping professional that you connect with who is committed to supporting you on your recovery journey is far more important than having the label to give yourself.

It's oh-so-tempting, because it's so validating to have your experience qualified, but you don't want to find your identity in the diagnostic acronyms. You are a much more complex, and much more valuable than those 4 letters could ever capture.

I have been absolutely blessed to receive therapy through a local non-profit at no cost. Nothing is billed to insurance, so no diagnostic label is required. She's never made a big deal out of it, but has casually mentioned that I'm dealing with PTSD.

It has helped to reinforce that we are not the sum total of our experiences. We have value as human beings that far exceeds the ugliness of what we've lived through, and we don't have to be defined by a diagnosis.

By all means, I would encourage anyone struggling to get professional help... but let moving forward and embracing life be your motivation, not diagnosis.

Hope this doesn't sound like I'm trying to tell you what to do or think... just trying to be encouraging

[Alice97]

pappillon - Thank you so much for your encouragement. I needed reminded of everything you said, especially today. You made me cry in a d way, so thank you 

I mostly want a diagnosis because I want to be sure of what I'm dealing with. I also feel like it might be easier to explain to people that I have PTSD, versus having to explain in detail all my symptoms for them to understand how seriously I'm struggling and how they can help. But like you said it's also tempting because I so badly want to be validated. I just feel so lost and confused and feel like it would be a comfort to better understand what is going on in my head.

[Dutch Uncle]

I keep wavering back and forth between not wanting an official diagnosis of PTSD, and really wanting to know for sure. Part of the reason I don't want to is the thought of being evaluated and having to talk about all the stuff that scares me most would be incredibly difficult. I'm a person who feels a lot more at ease when I know what to expect -I hate surprises. That brings me to my questions.

To those who have been evaluated and were diagnosed with PTSD:

I have not been diagnosed with (c-)PTSD, but I have gone through an evaluation proces to see if I had an anxiety 'disorder', en when that was ruled out quickly, I went through an official diagnostic test for Personality Disorders.
So my answers are based on that.
If you feel my experiences will not be of aid to you, feel free to skip the rest of the post, or discard what I have said afterwards. 

(1. Do the doctors/therapists who do the evaluation give you a definition of trauma? A lot of the websites I've seen online for PTSD define trauma as involving a life-threatening or physically threatening event. My concern is that they wouldn't consider emotional/narc abuse traumatic.

Does not apply to me. Though in case of the anxiety, in the first or second visit I made there was talk about anxiety, and it quickly proved to me (and the psychotherapist as it turned out) I had a skewed view of anxiety. I thought it was always an 'irrational fear', but she quickly told me that in many cases fear and anxiety is not irrational at all. In many cases it's warranted.
That was a sigh of relief for me.

(2.  Was the evaluation process triggering? I really don't want to have a breakdown in the middle of it.

Yes, quite. It was hard to be totally honest to them. Well, to be totally honest to myself I guess. As in: telling other people (strangers in this case) honestly about my past and my fears was quite triggering. I was throwing it out in the open, I was being very vulnerable. And part of my history is that being vulnerable practically always meant I was then taken advantage off on the particular vulnerability I just 'confessed'.

(3. How long did the evaluation take? I know this will vary considerably from person to person, but I'm just wondering if they just go through a few questions, or if it is a long, thorough process with lots of questions.

I got a questionnaire to fill out at home. Two weeks later I took that to a specialized person (a psycho-diagnostisist as I think it's called) who read my answers, and then on basis of the questionnaire asked more in depth questions pertaining to certain answers I had given. The whole interview lasted about two hours.
It took another three or for weeks before the results were presented to me, in person, by my primary psychologists. They had discussed the results in a team-meeting (of at least three people) before that.

(4. Were you surprised about anything? Did anything happen you didn't expect, good or bad?

Yes, the best and most liberating thing I experienced is when I finally opened up about my suspicion that my TherapistMom had implanted the thought in me I was 'mentally defective', which lead to me being offered the SCID-II test (on PD's).
And since the test came out negative (as in: no PD  ), that opened up te doors of me discarding the idea that it is me who is 'defective'. That it might very well be true that my DramaMama has implanted this horrible Inner Critic in me. It lead me to OOTF (since after the test I read up on PD's, just to make sure I knew what I was actually tested for) and quickly realized that members of my FOO show many signs of PD's, including the  's.
OOTF brought me to OOTS, which has been instrumental in working through the cPTSD I contracted from my FOO.

"It's not me, It's them" is a whole new perspective on (my) life.

The only downside to my experience is that as they tried to diagnose me twice, and both returned a 'negative' result, they could not diagnose further. Insurance constraints.
But I take that as a positive sign as well: they seem me quite competent, competent enough to handle this without professional psychiatric help. Knowing what I know now, I certainly would have preferred a cPTSD diagnosis and a counselor provided for me by my insurance.

Alas.
I have OOTS though. 

I hope this helped in giving you some insight in my experiences with being diagnosed in the Mental Healthcare Field.

[Alice97]

DutchUncle -

Thank you for sharing your experience. It was very detailed and extremely helpful.   

[Dutch Uncle]

DutchUncle -

Thank you for sharing your experience. It was very detailed and extremely helpful.   

Great!

[Danaus plexippus]

I got my eval as an in-patient. Following the advice of my counselor, I brought my copy of “How is Your Brain like a Zebra?” to my neurologist. I explained to her how my mother had smoked heavily while pregnant with me, how this is associated with increased incidence of hypersensitive to pain and how biofeedback therapy could be helpful in pain management. Neuro doc asked me how I felt. I told her I still missed my recently deceased sister very much. She asked me if I wanted to hurt myself. As it turned out the weekend my sister stopped eating and became unresponsive was the weekend I did not make it up to the nursing home. When I drove up to the nursing home for the last time and found her bed empty and all her pictures had been taken down off the wall, a nurse followed me into the room and told me my sister had died that morning. I felt so bad I hit myself in the head. Neuro doc instructed me to go with the nurse to see about that biofeedback therapy I was interested in. As it happened the nurse had a 500 pound companion, his rolled up sleeves revealed the traditional tribal tattoos of a Maori warrior on his massive ham-like forearms.
While I was a guest of the Bellevue Hospital Center Comprehensive Psychiatric Emergency Program, I was separated from my Advair, my Ventolin, my Klonopin, my cash money, credit cards, driver’s license, registration, proof of auto insurance, AAA card, Photo ID and magnetic pass cards for my job, metro cards, path train cards, health insurance cards, WTC Environmental Health Care ID, supermarket rewards cards, pens, plastic document protectors, my book bags, keys and shoes. They were disappointed I did not have a belt they could also separate me from. One of the other customers was allowed to keep a book, so I made a grab for “How is Your Brain like a Zebra?” but they snatched it away from me, because my copy was hard covered not soft covered and could therefore have posed a real and present danger. While enjoying the sumptuous hospital hospitality I was offered a hard plastic tray upon which was food that was clearly contaminated with pieces of dead animals.
They subjected me to Wheel of Fortune and Dancing with the Stars. I imagined this was just to break my spirit and soften me up for the electroshock therapy to come. When I was finally interviewed, I gave all the right answers to question after question until I was asked to count backwards from 100 subtracting 7 each time and spell words backwards. I flat-out refused! What the * was this, another idiotic game show? I demanded to know to the best of the interviewer’s knowledge was there or was there not a biofeedback pain management therapy program in this facility. He hesitated, broke eye contact and grinned a weak little pathetic excuse of a grin, upon which I demanded to sign myself out! He asked me how I felt. I replied “Duped!” He told me he would brief the doctor and that I should go back to the TV room.
Around 9 PM it occurred to me that no one knew where I was or that my cats needed food and water and that if I did not get back to the garage in NJ before midnight the gates would come down and I would be without my car! It was at this point that I did exactly what I should never have done in this situation. I went over to the bulletproof thick plexy partition and DEMANDED TO BE LET OUT! I went on a tirade about how I was supposed to have taken my Advair at 4:30 PM and my other medication at 6:30PM. COPD and asthma is not a hangnail! I need my medication and I need to leave now! The two Caribbean nurses looked up and almost turned white. In barely perceptible whispers they both urged me to move away from the window and sit down! The doctor on the other side said “Yes, yes just give me 5 minutes.” I was still to annoyed to be afraid, but the looks on the faces of the nurses persuaded me to comply.
Ten minutes later I got up again and told the doctor (who by the way, bore a frighteningly close resemblance to my bat $#i+ crazy mother-in-law) “Look this is all a mistake. I have to get back to NJ and get my car out of the garage before it closes for the night. I have to be at work by 8 A.M. tomorrow or I will lose my job! To which she replied “Just give me two seconds.” I began pacing like a caged animal. The doctor informed me my turn was next, just go sit down. I told her to “GIVE MY TURN TO THE NEXT PERSON AND LET ME OUT NOW! Maori man shot up from his bench, pivoted around to face me and began to stomp full speed up the hallway straight for me. The doctor leaped from her seat, papers flew, the interviewer chased after the doctor. The nurses leaned back in their chairs, eyes and mouths open wide, knuckles as close to white as they would ever get. I glanced over at my chair as if it was home base and all I had to do was slide back into it and I’d be safe. Unintelligible grumblings erupted from Maori man. The doctor said “No! I will see her now!”
The psychiatrist asked me if I knew why I was here. I told her because Neuro doc is uncomfortable with the subject of death and loss. The psychiatrist chose to ignore my passive aggressive sarcasm and proceeded directly to the cognitive thing, explaining that even if I were with my sister 24/7, I could never have protected her from all harm. The psychiatrist looked up four biofeedback institutions in NJ for me and had me promise to get help if I ever felt I was not “safe!” The clerk gave me back my shoes and other stuff. I took one parting glance at tattooed Maori man and lit the * out of there. Didn’t get home ‘till after midnight. The train back to NJ stalled out in the meadowlands. As I sat watching time pass I repeated one of the most important things my sister ever reminded me of “You are free to come and go!”

[Alice97]

Words can't describe how horrible that experience must have felt to you. I'm so sorry for your loss and everything you've been through.