Check in: Time to diagnosis?

Dx 2012 dx'ed again 2015

I have had one therapust from the start. I saw her every few weeks initially befor building up. Over the years it has been weekly, twice weekly and three times weekly. Currently one double session per week.

I first saw her in about 2004. At some point she diagnosed BPD but amended it in about 2013 to DID. However, I don't think she told me about the DID until I was ready and she suspected it for quite a while.

So, time to diagnosis was about 9 years with her.

What do you plan to do with this information Una?

Team78: That is half the data; what about first contact with mental health services?

Jolly jo: Thanks! I'll go with 2004 and 2013, 9 years.

At first this thread was, like many others I have started here, for mutual interest and to put our varied experiences in context. However, the initial responses here surprised me and I saw there is something interesting going on. So now I am working on a paper exploring that.

As you know, I have not PM'd you for more info. I'm keeping it real simple, up front, with a tight focus on time to diagnosis. I am searching the research literature for comparable data, and I may get some.

So as not to bias contributions, I won't say more at this time except I am hoping for more readers to contribute their data. So far N = 43; I am sure we can get to 50 and 100 would be even better.

First contact with MHS: 2003/2004
Went to therapy on and off from 2003/2004 to 2005/2006 (trust issues with T's, one T I really liked moved out of state, which was devastating.. after bad experiences, I gave up on trying to go to therapy.)
Went to counseling 2015 - Mar or Apr of 2016 (which helped work through some issues, but the topic of DID never came up)
Starting seeing my current T summer of 2016, who diagnosed me in our 2nd or 3rd session.

So
2003/2004
13 years

I was diagnosed with Dissociative PTSD in 2016. A few months later my new therapist said I "definitely have fragments". I clarified "as in OSDD" and she said "yeah". So that is when and how I was diagnosed with OSDD. I still argue that I'm not dissociative though every once in awhile. I don't get anywhere with my therapist cause I also argue that I don't have trauma though.

My first contact with "mental health" would have been in childhood. I was diagnosed with ADHD and learning disabilities but by testing and a neurologist. I feel the diagnoses were/are accurate but it's difficult to separate out my "symptoms of ADHD and LD" from emotional abuse and neglect and physical abuse. I was never a "bad kid" but I was sure hit a lot. I think this made my "symptoms of ADHD and LD" exist and/or be as severe as they were.

I did therapy for relationship stuff and then for work stress about 10 years ago.

I started therapy which actually lead to my diagnosis in 2015. The only reason I was diagnosed so quickly though this time around, when it really mattered, is because I have access to articles on dissociation as a grad student and because I was obsessive about figuring out what was going on.

Tons of my friends and people in my community are not so fortunate and probably will never be diagnosed. Trauma conditions makes diagnosis harder and if you're Black or Brown you're more likely to be seen as a criminal than as someone who has survived trauma.

FaithDaisy: Thanks!

Kevin_pf: What year was that childhood first contact? I understand about needing to be pro-active about the diagnostic process. Been there, done that. Once I decided I was going to get to the bottom of all the weirdness, diagnosis took no time at all.

Anyone else today?

First entered the mental health system 12 years ago at body age 18. It would have been 2005.

2005 - Sent to mental health ward by general practitioner.
dx OCD plus depression with psychotic symptoms. Prescribed anti psychotics and anti depressants. Not sure what happened but at some point I stopped taking them/was weaned off them. I don't remember.

2005 - 2008 - in & out of hospital & doctors office. general assumption was depression & anxiety. Possible histronic disorder (serve phyisical pain with no organic cause)

2010 - dx post natal depression and anxiety, given meds again.

2012 - Self admitted to mental health ward. Don't remember dx. something to do with anxiety, panic disorder, psychotic break. given meds & sent back to doctor.

2013 - Back at another hospital,
Evaluated for bipolar1 & 2, negative for bipolar 1 & 2
Evaluated for skitzophrenia, negative for skitzophreniea
Evaluated for BPD, negative for BPD
Evaluated for Anxiety & Depression, Positive for both plus comorbid conditions such as OCD, eatting disorders, explosive anger etc since age 8, 1994.
Dx Anxiety, given meds, sent back to doctor.

2014 - First time I noticed time lapses/couldn't remember things others were saying I had did. Partner suspected Bipolar due to rapid extreme mood & attitude changes. sent back for 2nd bipolar evaluation. negative for bipolar. positive for anxiety.

2014 - First time I told a psyc I felt like 2 completely different people (Had no idea what DID was/had never heard about it at this point) Saw this psyc approx 5 times. I remember her saying we had to pull all these people together, that I am just one person. She never mentioned DID. I eventually stopped seeing her as I could not complete the tasks she asked me to do. I found it impossible to pull the states together and make decisions as one.

2015 - Suggested PTSD by social worker, at this point I could not remember or describe anything to doctor that could have caused PTSD. Dx Anxiety.

2016 - Started experiencing memory flooding, server DP & DR for the first time. Admitted to hospital. Discharged with no explanation as symptoms wore off & no organic cause (I lost the ability to use one side of my body, stroke suspected but no stroke found, symptoms wore off. discharged) Refered back to GP & psyc. Dx with CPTSD. Sent to community mental health team. dx CPTSD & BPD.

2016 to current, GP & Trauma councilor dx DID, CPTSD, ADD
2016 to current, psyc dx CPTSD, BPD.

Total 12 years, still no formal dx from psyc

Cant remember how I found out about DID. I think I was googling symptoms due to serve flashbacks, DP/DR resulting in hospitalization. I thought I was going crazy. I was terrified.

What it feels like to live with DID and not have it formally acknowledged:
Hell. It feels like Hell. It feels like I can't be myself as I am not me. I am only allowed to be one person, but I am 16+. I am only allowed to act like one of them. Many of them are not allowed to live as they are told they are not real, and that this is not their body. It feels like my body is a jail cell. that we have been locked away but we are not guilty of anything that warrents imprisionment. It feels like being called a liar, an attention seeker even though we hide and only talk very rarely in doctors offices.. we are still apparently attention seeking.. we cant be what we are, so we have to be nothing. we are not allowed to be. Imagine locking a 6 year old child in a dark room, and telling that child they are not allowed to see anything, they are not allowed to hear anything, they are not allowed to speak. They are to sit there until they die and pretend they do not exist. Multiple that by 16. That is what DID feels like.

First contact with Mental Health... Around 2001... Was told that I should go to church (according to mother, honestly can't remember this. But father and mother also thought I was possessed since I didn't acted as I used to).

Through the years (2005, 2007) went to some therapist but none made me feel comfortable or I just couldn't trust them.

2012: Was diagnosed with Asperger's and PTSD.

2014 (or 2015?): Here I tried to go to a therapist when I was having too much of anxiety and she ended up telling me that no one would like to be around me if I were nervous. I didn't went back.

Now I'm trying to have enough money to go to a better therapist, but I don't have high expectations of it.

So... 16 years, no formal diagnosis.

First contact with MH services was 2004. But sparse and irregular until 2008 and then late 2012. 1.5 years later I was diagnosed DDNOS

So technically about 10 years.

Una+ wrote:It is often said that the average person with DID waits 7 years for diagnosis. That is based on data published many years ago. Is it still true today? This thread is a survey is for those who have a formal diagnosis of a major dissociative disorder, either DID or DDNOS/OSDD.

Year diagnosed?
Years from first contact with mental health services to diagnosis?

Me: 2011, 0.2

You?

Year diagnosed? 2012, 11 years