Other Ddnos folks - do you feel misunderstood?

[theshadowoftheliving]

For those of us with DDNOS - do you feel misunderstood? There is so much literature on PTSD and so much on DID but so very little on the catch-all of DDNOS. The implication is that my experiences with this are not bad enough to matter (to be DID).

I'm also curious because the ISSTD treatment guidelines lump DDNOS into the treatment of DID, stating that it's similar enough to treat the same, with two types of DDNOS usually existing - "not yet" and "not quite." I know a good chunk of those diagnosed with DDNOS will later have their diagnosis revised to DID.

For people with DDNOS/DID - any insight into understanding where you fall on the "not yet/not quite" scale?

I'm trying to make sense of my experiences, but the lack of literature is making this surprisingly difficult.

 

[Pencil]

Bless you for this post!

Yes, the lack of literature makes it extremely difficult. Plus, therapist don't seem informed. Strangely, it was my first therapist who explained me to me, long before the diagnosis existed. So I am 'not quite', but where i am on which scale I have no clue.

So, sorry, I can't be of any help.

 

[shimmerz]

This is a great posting. And yes, misunderstood? I am still trying to figure this one out. Do I try to make myself understood through the telling of my experiences or do I just resign myself to the fact that I will NEVER be understood. By anyone. A lonely, lonely place to be. And at times very dangerous. For real.

I, myself see DDNOS as a Structural Dissociation thing. I have 'parts' but 'soft parts' not the concrete wall of parts associated with DID. Usually one part is watching while the other is acting out. So I notice there is an alikeness of DDNOS and DID but the nuances between the two are very significant.

Great post. Thank you.

 

[WhisperingUnicorn]

My husband is undiagnosed, but most closely fits DDNOS .. there are TIMES when he's more "DID" apparently - That is, we "know" his parts pretty well, though they are more "fragments" .. but at TIMES "they" appear to be more independent selves .. Mostly it's like his "Middle" (host?) is "sharing" the moment with any given part of himself, but "Middle" is rarely wholly himself.

Misunderstood? FER SHER. My man has struggled his whole life with this .. In large part cuz he didn't understand himself, either. Now that he DOES "understand" himself better, he has re-interpreted some of his past experiences, and rather sees why people didn't always "get" him in past situations (and he's learning to "choose" to believe this isn't automatically a death sentence on "love" or connection - it's not that he is intrinsically "unworthy of love" :( :( ) .. But he was also trying to "hide" his "switches" because he was ashamed of his life, his past, his "extreme" personality .. and he felt powerless at times (cuz a part could "take over" temporarily and he would get stuck with the aftermath) .. So he developed a need to "control" every social situation .. And "ran away" (moved from state to state) anytime he felt people were starting to "figure him out" (ie - began to see him as "crazy" which is how he saw himself) ..

I think part of the disconnect in the literature on topic is mainly the fact that each person IS so unique and the DDNOS experiences are SO varied .. "Therapy" can only work with so much .. what has been most healing for my man has been .. and I say this without ANY pride, but more awe .. OUR relationship. I can be in his everyday life, and work WITH him on the so-called "therapeutic" side of things in the hour by hour .. I can discern patterns and trends, and love him unconditionally THROUGH his journey, just as he does me! (He has been the greatest healing influence in MY life, too.)

And, perhaps most notably, he was circumstantially forced to stay in one geographical area - he couldn't just "run away" when things got tough, around them time we were becoming friends. He learned to TRUST me (I suppose I "proved" myself trustWORTHY, is a better way to say it) .. So when we began to knit together his past narrative, recall memories and keep track of his personal timeline (which was a jumbled mess in his own memory - he called them "shards" or "splinter" memories, cuz things would literally mix up in his recall), he really experienced the greater COHESION of himself, and gave him a more stable footing ..

It's a bit of a blessing AND a curse that I'm so prone to over-analyze and over-think .. It's made me a good (and insistent and stubborn?) researcher .. Mixed with my own "counseling" temperament, I became kinda a surrogate "therapist" in SOME respects .. But since I'm also his wife, it's much harder for me to "not take things personally" if/when they come up. Then again, this helps me work on ME and my own "expectations" in the relationship, too ..

I very much SHARE the frustration that there is so much "cookie cutter" stuff out there .. I would have WISHED for this to be easier, as if someone else had more answers figured out for us, cuz it's been a bumpy road at times. :) :( .. On the other hand, there's also a BEAUTIFUL side to the story where we've had to rather make up the rules as we go along .. It's helped build a kind of relational "muscle memory" for having to have GRACE for one another, it's teaching us PATIENCE and setting aside presumption, and we really do have to figure out what WORKS for us, which means we end up working on "us" a whole lot more than it seems most couples "work" on their relationships .. and we reap great BENEFIT from this intentionality and investment in each other and moving forward together ..

We now think maybe WE should write a book, tell the story of our journey to add to the "literature" out there in case our varied and unusual circumstances could help others .. so they don't have to "reinvent the wheel" at every level ..

My reply, here, isn't exactly "organized" per se, but I appreciate the thread topic. FER SHER. ;)

~WU

 

[WhisperingUnicorn]

PS - my husband would describe himself similarly:

I have 'parts' but 'soft parts' not the concrete wall of parts associated with DID. Usually one part is watching while the other is acting out.

 

[Dissociated1]

A good friend of mine has vented his frustration over many of the things that have been mentioned in this post. He shared Link Removed with me so I could better understand the differences between the conditions we each have.

I suspect more literature exists on DID mainly because it is easier to understand. The human mind's response to trauma is extremely predictable and the predisposing, precipitating & perpetuating factors are very well quantified. DID is considered to be a disorder of secrecy because the victims' lives depended on hiding the coping mechanism. DDNOS is even more elusive.

Someone on the forum recently made the excellent comparison between therapy and an antibiotic that works like a shotgun to fight a whole variety of bacteria rather than a single strain. My trauma therapist explained diagnoses are clinical descriptions that have very little meaning in actual therapy. Dissociation is a spectrum with the losing track of time while driving many people experience on one end and dissociative identities on the other. The goal of therapy is to treat the cause not the symptoms. Regardless of the diagnosis, the work required to heal the underlying trauma is the same.

 

[WhisperingUnicorn]

@Dissociated1 .. the link gave me an error message :(

 

[Ronin]

Before I had any sort of therapeutic input into trauma-multiplicity, I was too busy just living through and remembering day's necessities to feel misunderstood.

Since then, too much D.I.D. related abuse, both influencing how I function and forming new issues, falling both into D.I.D. and DD-NOS diagnostic range, happened, for me to really dwell on feeling misunderstood.

It's not as much about misunderstanding for me as concrete ever present erasure and dehumanization. They both are traumatic on their own and tying to different axis of trauma.

Practically the only place I talk dissociation at these days is here, though. Plenty fellas with the same or very alike issues, less 'I'm so alone' concerns.

In agreement though. Literature on the very topic, and blurs and grey zones that are 'not the typical' D.I.D. is practically nonexistant, and support still lacking.

 

[Dissociated1]

@Dissociated1 .. the link gave me an error message :(

Apologies for the broken link. I have corrected the cut and past error I made copying from my friend's email in my post above.

 

[digger]

He shared Link Removed with me

Coincidentally, my therapist just made me aware of that site/organisation today.

 

[Dissociated1]

(Hoping I am not violating forum guidelines)
MaleSurvivor.org is an excellent resource for men of all ages who have experienced sexual abuse. The forum is a strong support system for suffers of DDNOS from CSA.

 

[WhisperingUnicorn]

I was too busy just living through and remembering day's necessities to feel misunderstood.

My husband would definitely say this, too .. but there was also "part" of him that was very "wounded" by the constant disconnect. He internalized this as an inability to be loved .. But the more assertive "protective" side of himself kinda turned on the more "tender" side of himself internally .. He resented his "need" for affection and love and considered it WEAK .. so he was also internally abusive. He accused himself of somehow deserving to be rejected, and yet simultaneously RESENTED (and became dismissive of) others for rejecting him....

Honestly, I can really relate to this dichotomy (on a less well-defined level) from dealing with areas of my own maturing/healing journey.....

~WU