My path to diagnosis (sort of an intro...)

This is my first post. I started this out as a reply to the "Time to Diagnosis" thread, since that seemed an easier framework to start with, but it got really long and detailed, so I decided to just make it a new thread. (I can still post a short version in the other thread at some point). I hope this is ok.

My first contact with the mental health system (from the seeking-help side of it) was in 1986 at the end of graduate/professional school and was very brief--just for help separating from my family to move across the country--so I'm not sure it should count, but there it is.

**Trigger Warning (bad therapy experience, self-harm) **

Then I had a horrendous and very damaging therapy experience from 1988-1991 where in retrospect I was dissociating a lot, since a lot of emotional abuse from childhood was being recreated in the therapy relationship with an analyst who had no sense of his own limits in his attempt to provide a kind of corrective re-parenting experience. His response to my needs was to try to provide more and more contact, which of course was never enough (I became very depressed, was cutting and bruising myself when I had never self-harmed before, and ended up going on medication for the first time), and then he ended up abruptly transferring me to someone else. I was just left feeling like what happened was all my fault. And I had entered that therapy only because I had just gotten engaged and was having difficulty accepting how well my life was going. So he basically took me right back into my "comfort zone" of being emotionally abused and miserable.

**End Trigger Warning**

I saw the female analyst I was transferred to for about 9 months but I was a mess, and we never even talked about the experience I had just had. It seemed like she was protecting him--nothing could be his fault, just mine. I don't even remember very much of it. And I was kind of a mess for years afterward, way less able to cope with anything stressful, although I put it out of my mind as much as possible.

Fast-forward 12 years and 3 children later, and there was an event that made me realize that I was still traumatized by that therapy experience (I needed to see another professional in that same building, and was terrified to park on that block and walk into the building), so I found a good female trauma therapist who I saw every couple of weeks for a year and a half, and I began to realize I wasn't to blame for what had happened. She was very gentle, and in retrospect I was basically taking younger parts there to heal and to be able to sit and color and not have to be shunted aside for the "real" kids like they pretty much had to be the rest of the time.

Then about 7 or 8 years later, with my youngest (outside) child about 12, I went to someone who I thought was good at dissociative disorders and saw her every couple of weeks for a year or so. By this point I knew I had some kind of dissociative disorder, but didn't think it could be DID since I wasn't aware of parts, didn't lose time in an obvious way, and didn't have a dramatic abuse history. (Although when my oldest was 4, I became briefly aware of a 4 yo boy inside me, but then became unaware of him again). This therapist became impatient with how anxious I was about resuming therapy, and didn't seem to recognize that I was younger there and not the person who did the accomplished professional job I had put on the intake form. She tried helping me with relaxation and grounding, but I didn't know how to do that on my own, and I became so upset after a session (where she was impatient with me) that it was hard to put that aside to emotionally support one of my kids who had had something upsetting happen that day. So I didn't go back.

Over the next 3-4 years, I was intermittently aware of parts (I recall telling my husband, "I have different parts, and some of them don't like you," and I recall talking to a toddler part one night who insisted that my husband was her daddy). About three years ago I started meditating daily (it was my 2015 New Year's Resolution) and I think that helped a lot with emotional regulation. I became more willing to take emotional risks and to pursue activities that I loved that were too scary before (particularly in performing arts). This past spring, I felt like things were going very well, and I was doing more performing, but also feeling like I was restricted by not really having access to my feelings (and knowing that this whole aspect of what I was doing was completely unrelated to who I am at work or who I am when I'm in "mom-mode"), so I had on my list to contact an expert in dissociative disorders and in early June I found someone good who was less than 40 miles away. After just seeing him a couple of times, I started becoming more aware of parts and it's been quite a journey over the past 5 months--MUCH helped along by this forum! (Which I've been obsessively reading, sometimes for hours a day, from the oldest posts to the present, which I finally got up to about a week ago).

As for diagnosis, I had been having internal debates during the summer about whether I had DID or OSDD (where I found myself telling my husband things like, "M thinks we have DID, but D and I disagree with her") but my therapist is much more about each person's unique experience and less about labels. However, when I asked him for a superbill for my insurance, he handed it to me with three F codes on it--for Major Depression, Generalized Anxiety, and DID! (I had him take off all but GAD). And when I asked him about it, he said that I met the criteria (which he views as an older way of looking at it anyway, rather than the more current view of covert parts often working together to create a unified presentation).

So, 1986 to 2017: 31 years from first contact to DID diagnosis.

This post feels both way too long and over-detailed, and also woefully incomplete, but it has already taken up way too much of my evening, and I have to be in work-mode tomorrow. I just want to say that I am immensely grateful for all the wisdom, insight, and kindness on this forum, which has been such a huge support so far and has really helped me accept my diagnosis and all the strange, "can't-make-this-stuff-up" bizarreness of it all.

S.P. (Surface Person--I guess I'm the "host" of our system)

Good for you! Awakening late is much better than never.

Thank you for sharing your story. I always find other people's journeys so interesting. You suspected your diagnosis first before being officially diagnosed. It must have been a hard wait and a relief when your suspicions were finally confirmed.

My DID diagnosis was a complete shock - like a bucket of ice water had been dumped over my head.
Never in a million years would I have come up with that. I also remember that I was deeply offended by the diagnosis.

Hi S.P. and all,

Welcome to the forum. Even though you've been reading for a long time, we're glad to meet you.

And we're glad that you've finally found a good therapist. We look forward to getting to know you.

MDs

Therapists are human; Some are not for me! its a strange thing; one wants to be taken care off, and some don't and dont care! Ive dealt with some therapists where I should have been giving them therapy! Some have no maturity or interest in my problems; shocking! time to move on!
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Dissociative disorder is a rough deal; theirs a lot of trauma that is packed around the mind and nervous system! In the normal person, its enough trauma to kill someone, but in more artistic? people, intelligent abstract people; their brain is able to compartmentalize things and rearrange things, and forget things!
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I have all forms of dissociative disorder; the absolute worst for me; and what hit me was dissociatively amnesia; horrible levels of the stuff! I knew what my mothers name was, I new the the name of the town I grew up in, I new who the first girl I loved; I knew her name! I knew that I was in a new city to go to junior high and high school!
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My childhood was severed off! When I could finally remember or was allowed to remember, through that specific child personality, I was only allowed to see it from the air! meaning, I could look down on that part of my life from 2 miles up; no closer, and watch the past reals go by; as if I was watching a movie of someone else life! I couldnt feel any of it! took a lot of work!
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Every area of my life was cut out and departmentalized! The times of sexual abuse; 8 to 13 or 9-10 to 14; shut out; blanked out; black out!
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all I could do was ride a bike, as an adult! I was completely disabled!

Thanks for the warm welcome! I was kind of nervous about looking at the replies, but I'm not sure why, since pretty much everyone on here is friendly and nice.

Una+ wrote:Good for you! Awakening late is much better than never.

Well, I did spend a lot of time at first being upset about not knowing sooner. There are a lot of reasons why I should have known--I knew a lot about dissociative disorders starting in my late 20s, and was exposed to a number of people who had DID, and had read a lot about it in the late 80s and the 90s. But I didn't know until this June that a history of severe abuse wasn't required, or that not everyone had obvious loss of time. Of course, I could have been following new developments in the understanding and treatment of DID, but I didn't. Hmm. Probably there were parts that didn't think I was ready to know.

Hi MDs! I'm glad to meet you too!

kittenspuppies, There wasn't any period of time that felt like a hard wait, and I really didn't think I had DID. I just knew I had some kind of dissociative disorder--that I coped with stress by dissociating with depersonalization or derealization. I actually looked at this forum about 3 years ago, and really only noticed things that were different from my experience, so I "knew" I couldn't possibly have DID. After my second therapy session with this new therapist, I was lying in bed and about to fall asleep, thinking about him, and I felt this rush of affection which normally I would have pushed away since it was not okay to feel like I wanted to hug him. But instead, in the spirit of being curious about my mind (which this therapist was creating the safety to do) I kind of said inside, "Oh, so you're having that feeling," and the excited voice of a young girl said, "You talked to me! You talked to me! You never talked to me before!" That was quite a shock! And that was the first time I really was aware of parts in a way that I could no longer avoid. But I still didn't believe I had DID (even though that part has been sure of it and she thought of instances of amnesia to try to prove it to me a few months later). So it was a surprise to have my therapist just stick that diagnosis on the bill for the insurance company as if it was so obvious that we didn't even have to talk about it first. Not as much of a shock as it sounds like it was to you, but still quite a notable event. And I guess it was a relief to not have as much of a debate about it inside anymore, although I do have bouts of denial now and then.

Hi OMNICELL,
Thanks for sharing your experience. I agree that a lot of therapists have their own issues and can end up creating more suffering in the people they are supposedly trying to treat.
I think that I had early physical trauma, before age 3, so I have body memories but few images. My memory is pretty continuous from age 3 on, but I definitely spent a lot of time outside my body observing from above. I hope you have or can find a good therapist now in the present.

S.P. and The Gang (haha-sounds like a band)

TheGangsAllHere wrote:I did spend a lot of time at first being upset about not knowing sooner.

Same. For me that still is a big issue I have to work through. Not done with it even now.

TheGangsAllHere wrote:I kind of said inside, "Oh, so you're having that feeling," and the excited voice of a young girl said, "You talked to me! You talked to me! You never talked to me before!" That was quite a shock!

We know the feeling.

Una+ wrote:

TheGangsAllHere wrote:I did spend a lot of time at first being upset about not knowing sooner.

Same. For me that still is a big issue I have to work through. Not done with it even now.

Ditto too. It is extremely hard for me to focus on all the lost time. I mean by that all the lost opportunities to heal decades ago. My sadness seems to tap into deep pools of grief and hopelessness that I've just decided to put off for now. Welcome, TheGangsAllHere.

Thanks, Johnny-Jack.

I didn't mean at all to imply that I'm over it (for some reason that makes me think of Mary Poppins saying, "Spit spot!" as in, all done with that--now quickly move on to the next thing), just that it was more near the surface at the beginning, when I was in the "how could I not have known this?!?" phase.

There is a lot of grief that I'm putting off for now. My immediate reason for entering therapy in June was similar to my reason almost 30 years ago--things were going really well in my life, which made me feel strong enough to deal with past issues and to try to understand why I wasn't comfortable with things being good. The idea that back then I could have walked into the office of someone like my current therapist and actually started to understand what was going on in a useful way, as opposed walking into the one I did and experiencing three more years of the kind of trauma and abuse that I went through as a child (and decades more of damage from it), is something I need to actively avoid dwelling on. There are so many triggers for it--anything that is going well in my current therapy relationship brings up the comparison, any temporary disruption brings up fears that he'll end up being the same as the previous one. Then there is the grief about having to deal with that trauma in addition to all of the original ones that I already had.

So, yeah. Ditto three. I'm very glad to have a place to articulate all of this with people who really get it.

Well, on the up side, this is here and now. Now you are much wiser and so much safer. And you have found us! You won't be fooled for long, if at all.

Could I have gotten appropriate treatment 30 years earlier? Maybe, but not likely. So many posters here have shared that they did get treatment decades earlier but all the dissociative symptoms were missed (or dismissed) and the treatment was at best not helpful. 30 years earlier I had no money and knew nothing about mental health and had few resources and no supportive relationships, so I would have been extremely vulnerable to exploitation.