Confused About Complex Trauma

[Auburngirl]

Jestadud - there are some references below to give you a bit more info about CPTSD and DESNOS.

I am a bit worried when you talk about "making yourself fit a diagnosis." First, it's not your job to diagnose yourself. Second, you are what you are, the job of your doctor is to help you with what you are dealing with, regardless of whether or not it fits in neat boxes.

CPTSD is currently somewhat flexible, because of the different definitions, but even if it doesn't fit your doctor may just make a more "piecemeal" diagnosis and treat you for your unique circumstances. This might mean saying something like "you have an anxiety disorder and an attachment disorder as a result of port traumatic stress" or, "exhibits most of the characteristics of CPTSD except for X" and a description of symptoms. This is sometimes how sometimes people end up with a lot of different diagnoses (for example depression and anxiety, and dissociation).

Reading about the labels might help you find words for things you experience, or find solace in the fact that you're not the only one. But, in may opinion, it's not about finding the cookie cutter that fits you. There might not be an exact match (especially for CPTSD and PTSD which are both "cluster" diagnoses involving a list of different types of symptoms). This, is part of the reasons for all the "not otherwise specified disorders" (for example I have "Dissociative Disorder not Otherwise Specified" which just means the other disorders that are described don't match).

The fact that you are not seeing yourself reflected fully in a diagnostic label doesn't make it any less real. It just means there isn't a "what jestadud is going through" label, and, as a result, yours might be more scattered and descriptive. So long as it helps you get the treatment you need, I think that's okay.

van der Kolk, B.A., Roth, S., Pelcovitz, D., Sunday, S., & Spinazzola, J. (2005). "Disorders of extreme stress: the empirical foundation of a complex adaptation to trauma". Journal of Traumatic Stress 18, 389-399.

Herman, Judith (1997). Trauma and recovery: The aftermath of violence from domestic abuse to political terror. Basic Books. pp. 119–122.

Herman, J.L. (1992). Complex PTSD: A syndrome in survivors of prolonged and repeated trauma. Journal of Traumatic Stress 5, 377-392.

Roth S, Newman E, Pelcovitz D, van der Kolk B, Mandel FS (1997). "Complex PTSD in victims exposed to sexual and physical abuse: results from the DSM-IV Field Trial for Posttraumatic Stress Disorder". J Trauma Stress 10 (4): 539–55.

 

[starshine]

I always think 'My Life, NOS' is the most apt diagnosis of all for anyone!

 

[Auburngirl]

Starshine- I love it!

 

[sigh]

I've been reading along this post, and it occurs to me that my psychiatrist held off on giving me a dx until I asked for it (which was about a year into our relationship). He first asked me, why do I need to know? Which I do think was apt. We talked about the meaning of a dx and what it can do to you. We talked about how one can feel either liberated or put in a box.

I've been dx'd by several psychs over the course of many hospitalizations. Most of these dx's made me angry and just worn out. I felt as if I were trying all the time to find the right "thing", as if the right word would make me happy. When I lived in New York, I went to various bookstores as well as the Social Work Library at my university to try and "find myself" among the DSM, the stories of tragedy, etc., etc.. I learned that I have to FIND MYSELF ON MY OWN. I did other, less conscientious things, but they pointed me in the wrong direction.

I have a fear that the desire to know one's dx so specifically leads to becoming one's illness or despair rather than one being a whole person who happens to have a part of them which is "misaligned." My psychiatrist simply told me I had PTSD and Bipolar Disorder. He didn't specify what kind, nor did I ask. He knew what had happened in my family. He had already expressed anger at the the terror and horror at what my parents put me through. I knew that he understood. What's important to me is not so much the dx, but the horror that happened, that my boyfriend, my mother, my therapist, and my shrink understand. I thought I could get one of my grandmother's to understand before she died, but that was too late.

So, in my long blathering way, I'm simply asking, why do you need to know such specific terms what your dx is? What strength will you get out of it? What will it do for you? Do you need to justify something against the world? You already know what happened. People in my life understand because I tell them specifics, not because of nomenclature .

Outside of my bedroom window is a woman practicing piano for church on Sunday (there's a church next door). May we all find peace within ourselves.

Good to you all.
Sigh

 

[Jagged Angel]

Hello Sigh, Just in response to your question about what does a dx 'do' for me... the strength I get out of it is knowing that I'm not alone, knowing that I'm not crazy, knowing that what I'm going through is recognised. What will it do for me? It allows me to explain my world in two words: 'Complex PTSD' to a doctor, or an employer, or even to my mother, rather than the long, drawn-out explanation that involves a lot of emotion and pain for me. Do I need to justify something against the world? No.

It is just an easier way for me to explain me, my behaviour, my world....

 

[sigh]

In My Humble Opinion. Most people in the world do not know what Complex-PTSD is. People within Mental Disorder groups have asked me what PTSD is and how I got it. Even doctors don't necessarily know. (I've met them.) I would never mention it to an employer as then I might be seen in a negative light. I would never mention it to most everyone. My boyfriend didn't really know what it was until I told him what happened to me.

I'm not going against you--I think everyone needs to do what they need to do. I only want to share a different perspective. It isn't about justification. I think it's about what you're comfortable saying--especially if someone asks "whats Complex-PTSD?"
I'm not being adversarial--I've just had this happen to me.

 

[Nicolette]

the strength I get out of it is knowing that I'm not alone, knowing that I'm not crazy, knowing that what I'm going through is recognised

One saying that has stuck with me for years is "if you don't know it is broken how can you fix it?". In my opinion an accurate diagnosis helps you then know what you are dealing with. Rather than thinking you are crazy and don't have a clue why - with a diagnosis you can then begin to process that your thinking has been screwed due to traumatic events.

I also know myself that now if someone says they have PTSD or CPTSD etc I have a good idea of how to deal with them and not just making an assumption they are crazy by the way they are acting.

Some time ago when I was having kidney/bladder problems and they had done umpteen tests my new GP and I had a discussion after me thanking him for believing in me and finally finding a specialist who helped me. My GP said it is sometimes easy for Doctors to think that people are crazy when they can't initially find out what is wrong with them. If that is how Doctors can think imagine what the general public would think? I think a diagnosis at least puts you on a road to understanding and acceptance if nothing else.

 

[Jagged Angel]

That's fair enough, Sigh. I'm not being adversarial either... I just wanted to explain that the dx does do something for me. It is true that most people don't know what C-PTSD is, but many people do know what PTSD is... I do not tell most people that I meet, I only tell those who I believe need to know, and this did include a couple of my lecturers, and one of my employers... by the same token, I have also met doctors who have no idea, and sit there looking at me, saying 'but you haven't been to war, have you?'...

 

[sigh]

I think we agree, actually, we're just voicing it in different manners. I have lived here for four years and told nearly no one. Where I used to live, several people knew because I trusted them to know. I don't think I trust people well. That underlies what I say.

s.

 

[dharmaBum]

...I would never mention it to an employer as then I might be seen in a negative light. I would never mention it to most everyone. ....

I'm struggling with how to deal with this. I also never mention I have migraines to an employer until after I get the job! I have "dropped out" several times becuz of ptsd and this is reflected on my resume. I've been trying to practice the verbage when I have to encounter folks involved in the most recent project it has take me REALLY long to complete...

"I had a relapse of an injury related to a violent crime..." or "I had a relapse of a chronic health condition and am still recovering" or "???"

 

[starshine]

I've been involved in quite an extensive dialogue with work regarding how my illness can affect me, what the triggers are, and negotiating reasonable adjustments. I've even spoken to my colleagues about this, and how my symptoms are a result of things that happened to me in my past. They all appreciated this, and said how it helped them to understand me better, why I was/am the way I was/am.
However I'd been in the job several years or so before all this dialogue. The paradox being that being in a settled stable job, away from the stress of a re-traumatising situation in my previous career, enabled me to feel safe enough to fall into the breakdown process and start to heal.
I'm lucky in that I have very sensitive and caring managers and colleagues, and a disability coordinator who's supported me in advocating for myself.
I also have written a Mental Health Awareness Factsheet that we use with colleagues.

When I had a difficulty over a new procedure implemented, with support from work I sent the organisation involved [a phoneline we now have to use for sickness absences - and phones are not easy for me at all, especially when I am emotionally unwell enough to be freaking out too much to attend work..] a brief regarding my situation, including some links on Complex PTSD. The upshot? I am permitted to use an email contact rather than phone should I need to be off sick with mental health issues.

So. Yes. There are understanding folks out there.

And, to add to the other part of this discussion, in the words of my homeopath, I am "trying to be recognised as suffering from a long term illness, at the same time as trying to get better from it." It's a tough call!

 

[Mercy]

My experience of daily, moment by moment, changes are painful.

When my disassocations are complete, I cannot access any contemporary information. I have to say, "Sorry, I don't remember that." It makes my daughter angry that I can't remember what she said yesterday or some hard thing for her from last year. She feels abandonned by me. That is just devestating. I love her so much.

I feel ashamed and useless as a mother. I tell her I am listening to her and am with her while she is talking. I just don't have a way to make the memory stick. So she goes to my husband for what she needs done. In a way, it's a bit like a slap in the face but I know it is a reality she has to live with. She and I were so close when she was young. If I sat on a three person sofa, she would always sit in my lap until she was 15 or so. I miss our closeness. @#$%^& this lifelong prison.

I know who lives inside of me, especially the little children. They almost always stay hidden. That doesn't mean I have executive control. I only recognize the others when they are talking up space and time.

It is so hard to stay grounded and a singleton. It is exhausting. I'm trying to be more honest with my husband, telling him about triggers. Poor man, he didn't 'sign up' for this.