Still waiting

[Candid]

A while ago I wrote about the devastation I felt upon learning that the beginning of therapy was not imminent but that the waiting list was up to six months.  Another member (sorry I can't remember who you were!) correctly guessed that I'm in the UK and said she too had been told six months, but that she got in after three.  I had a number of breakthroughs -- thank you, OOTS! -- and stopped caring whether I had therapy or not.

Today I've received a letter from a Traumatic Stress Service inviting me to be assessed. They enclosed a pamphlet which said the service dealt exclusively with PTSD sufferers, listing what we all know about PTSD-simple: a life-threatening incident as victim or witness, resultant symptoms chiefly depression and audio-visual flashbacks, and if it goes on too long voila!, it becomes PTSD.

Before the breakthroughs I was helpless and desperate, would ask H to make phone calls on my behalf. This past week -- ie. since a major crack-up complete with SI last Tuesday afternoon -- I've been getting stronger and feistier by the day.

So I went to the phone, rang the number and spoke to a pleasant female receptionist. I asked her whether the Traumatic Stress Service knew about CPTSD. She put it into her computer and told me no, so I told her: "I've been through more than one life-threatening situation -- I was raped at 19 and the man was threatening to kill me; and my first husband once pinned me to the bed holding a broken bottle in my face -- but I had PTSD-like symptoms before that. Complex PTSD most commonly begins in childhood. My parents, particularly my mother, abused me from infancy onwards."

She asked whether I wanted someone to call me and clarify that point before I would agree to an assessment for eligibility to the Traumatic Stress Service and I said no, but that I'd already been assessed, about six weeks ago at the local nuthouse. As it happened the man I saw on that occasion was named for cc along with my GP at the bottom of the trauma service's letter.

It was only then that she asked for name, date of birth and phone contact. I'm to receive another letter from them about the assessment appointment. Looking forward to it!

Oh, and I said: "A traumatic stress service ought to know about CPTSD." Some workers at this one probably do, but if not they soon will!

[sanmagic7]

you go, candid!!!   well done!

[Eyessoblue]

Hi, that was me that told you that! Really glad you have had a response. I'm being treated for ptsd even though I know it's cptsd, strangely the cbt lady I've had doesn't believe the symptoms are different from cptsd to ptsd, I've finished with her now and am now on a waiting list for a trauma therapist all NHS again. It will probably be about 6 weeks, so is always hard when you're left for a length of time with nothing but I'm greatful for all the help I have received and hope the trauma therapist is someone I can relate to. Good luck to you.

[Candid]

Eyessoblue, thanks for putting your hand up. It sounds as though you didn't know you had CPTSD when you originally applied for counselling. Is that right?

strangely the cbt lady I've had doesn't believe the symptoms are different from cptsd to ptsd,

As I understand it the chief difference is that with PTSD-simple people experience flashbacks in which they feel as though they're back in the life-threatening situation. Pete Walker says complex PTSD is characterised by emotional flashbacks, in which (as I understand it) abandonment depression is predominant. I hope someone else will correct me if I'm wrong.

I liked what Diane Langberg says here  https://www.youtube.com/watch?v=otxAuHG9hKo -- that PTSD is a single event and CPTSD is a whole life. I got over having been raped (1975) when a more traumatic event occurred in 1991: the last occasion on which I saw both my parents. There was certainly no physical threat that day, but it turned my hair white in a matter of weeks. The battering marriage, five gruesome months in 1984, led to nightmares in which I was trapped with him again. That went on until I found out in 1992 that he'd divorced me, then the nightmares stopped. Truth is my life is a catalogue of trauma.

I'm greatful for all the help I have received and hope the trauma therapist is someone I can relate to.

I hope so, too. It can take such a long time to find a good 'fit'. Hey, we could end up sitting in the same waiting room one day without knowing it!

sanmagic7!

Thanks to you both for your good wishes.

[Eyessoblue]

Candid-yes you are right I didn't know I had cptsd, I thought I was bipolar (my diagnosis) but the psychiatrist I saw ruled it out and my therapist (first therapist) confirmed it was cptsd but the cbt lady I've just been with says it's ptsd- very confusing but I know that due to a life time of separate traumas it is cptsd, I think I tick every symptom there is going. Yes we could well be in the same waiting room, that's the thing isn't it with cptsd we look very normal on the outside so who would know what is wrong with us, I disassociate so much when I'm out with my friends and make out I'm someone I'm not, not one of them knows that I have cptsd but learning to disguise things from an early age has been a coping mechanism that I've become accustomed to and find difficult to try and change, but sometimes being that disassociated person is a good place for me to be, I've had 6 weeks of cbt to learn to sit with my feelings and be comfortable with who I am, I'm getting there with it but find it hard as I've never done that before and taken myself off to another 'place'. Hope you get on ok.

[Candid]

learning to disguise things from an early age has been a coping mechanism that I've become accustomed to and find difficult to try and change...

Yeah, I get that. In fact I believe my early-onset myopia was an unconscious choice not to 'see' what went on with other FOO members, none of whom needed glasses until they were much older.

... but sometimes being that disassociated person is a good place for me to be

Yes, I agree. When we're trapped in an intolerable situation we find the escape in our heads. One thing though, I'm learning to see the out-there persona as also me -- in fact more me than the scared and damaged 'me'. Like the Bard said, "We are all actors on the stage of life." I believe I can make a conscious choice to be more confident.

I've had 6 weeks of cbt to learn to sit with my feelings and be comfortable with who I am, I'm getting there with it

Yes. I had a recurring horrid thing where I would be okayish during the day, then as soon as the bedroom light went off my mind wouldn't switch off and I had something like a panic attack that I experienced as nausea in the region of my solar plexus. It often kept me awake for whole nights as I tried not to think about it. Now I'm doing better, not so do do do during the day and sleeping better at night.

I realise what I've been practising this past week is CBT, and I choose to believe my neural pathways are altering to more life-sustaining ways. This is a huge leap from wanting to be dead! 

[sanmagic7]

i totally agree with you on your last sentence, candid.   here's another    .  you're doing great!

[Fen Starshimmer]

So I went to the phone, rang the number and spoke to a pleasant female receptionist. I asked her whether the Traumatic Stress Service knew about CPTSD. She put it into her computer and told me no, so I told her: "I've been through more than one life-threatening situation -- I was raped at 19 and the man was threatening to kill me; and my first husband once pinned me to the bed holding a broken bottle in my face -- but I had PTSD-like symptoms before that. Complex PTSD most commonly begins in childhood. My parents, particularly my mother, abused me from infancy onwards."

Hi Candid, It's great the way you are getting on the phone and challenging their knowledge and understanding of CPTSD. Every trauma centre in the UK, in the US, in the world, should be well versed in C-PTSD now. There is no excuse for professional ignorance any more with so much information available. If there is ignorance, I can only imagine it must be political, that CPTSD doesn't fit with some political agenda. Maybe they would have to re-write their training courses, rethink their modalities and medications. Maybe they would have to stop calling it a disorder and acknowledge the brain injury aspect to CPTSD...Whatever it is, we need to exert pressure on them to wake up! I'm not afraid of doing this either...  It's a sorry state of affairs when we, the ones suffering from it, are more knowledgeable than the so-called 'experts'.

[Candid]

Every trauma centre in the UK, in the US, in the world, should be well versed in C-PTSD now.

I agree. I'm sure this trauma service must have come across clients with CPTSD, whether the client recognises it or not. I only spoke to the receptionist, so it's still possible the practitioners know.

If there is ignorance, I can only imagine it must be political, that CPTSD doesn't fit with some political agenda.

I would assume they find it too hard to treat, because it's all-encompassing, isn't it? And since this is a free service, I'm geared up for the likelihood that therapy is strictly time limited. That's a bit scary, because in my experience of longer-term therapy I've always felt much worse after a few sessions, and I don't want to be left hanging.

Whatever it is, we need to exert pressure on them to wake up!

I'll always do my best on that score, too.

It's a sorry state of affairs when we, the ones suffering from it, are more knowledgeable than the so-called 'experts'.

Until CPTSD is acknowledged, and people get over the motherhood myth, it won't appear in the text books. That's what we're up against. And psychology doesn't like to acknowledge things it can't fix.

[Fen Starshimmer]

Hi Candid, thanks for your feedback. Here are a few more of my thoughts on this:

I agree. I'm sure this trauma service must have come across clients with CPTSD, whether the client recognises it or not. I only spoke to the receptionist, so it's still possible the practitioners know.

Some practitioners may be better informed, I hope so. Having done a fair bit of research into the suppression and banning of effective treatments for other serious illnesses eg cancer, I am starting to think CPTSD is the Elephant in the room, and there is a conspiracy to keep people at a level of managing their trauma with CBT and drugs (Big Pharma = Big Profit for drug companies), and limited talking therapy time.... under the guise of "austerity". In my experience a multidisciplinary approach, a holistic mind/body/spirit approach has yielded more significant benefits, but some of these would be dismissed as 'wacky' by mainstream medicine. Personally, I don't care what they think, if it works for me, that's what matters. It makes me sad that there is so much unnecessary suffering, knowing what I know now.

Pete Walker says CPTSD is often misdiagnosed, and I can quite believe it, having been misdiagnosed and dismissed multiple times by GPs and other NHS services. On his website, he says: 'In my experience, many clients with Complex PTSD have been misdiagnosed with various anxiety and depressive disorders, as well as bipolar, narcissistic, codependent and borderline disorders. Further confusion arises in the case of ADHD (Attention Deficit Hyperactive Disorder), as well as obsessive/compulsive disorder, which is sometimes more accurately described  as an excessive, fixated flight response to trauma. This is also true of ADD (Attention Deficit Disorder) and some dissociative disorders which are similarly excessive, fixated freeze responses to trauma.'

Until CPTSD is acknowledged, and people get over the motherhood myth, it won't appear in the text books. That's what we're up against. And psychology doesn't like to acknowledge things it can't fix.

I believe it's up to us to educate and inform people about CPTSD... There are probably multiple reasons for it being banned from the text books. We can't sit and wait for them to catch up. Life is too precious. Keep on speaking up and questioning therapists. This way, they will have to change. The tide of people demanding adequate treatment is too strong. Every step forward in our healing journey makes us stronger and more determined. Every breakthrough and every word of truth we utter will help light a way for the ones further behind us. We have to keep forging ahead, no matter the setbacks, which there are bound to be. Healing and recovery is like a treasure hunt. There are gems out there, but you've got to roll up your sleeves and do the digging around 

[Candid]

I am starting to think CPTSD is the Elephant in the room, and there is a conspiracy to keep people at a level of managing their trauma with CBT and drugs

I had CBT about five years ago, ie. before I self-identified as the scapegoat and a trauma therapist told me about CPTSD. Medication hasn't helped me, as far as I know. My philosophy is, any medication that made this look okay would be dangerous. I agree with you about Big Pharma. IMO doctors are far too quick to prescribe their precious pills without being clear on what the pills do.

In my experience a multidisciplinary approach, a holistic mind/body/spirit approach has yielded more significant benefits, but some of these would be dismissed as 'wacky' by mainstream medicine. Personally, I don't care what they think, if it works for me, that's what matters.

I agree on both points. In hindsight, there were elements of CBT that were helpful and I've incorporated them in my personal toolbox. And it's obvious to me that I feel happier if I don't ruminate on the past, happier if I eat well and exercise regularly, happier if I have some form of daily spiritual practice. I was doing well with all that until I found out my father had died (six weeks previously) and no one had told me. That was when I plummeted into huge grief over the 'loss' of all my FOO, huge anger at the unfairness of it all, and huge fear for my future alone. I gave up caring about myself, just wished it was all over. I'm only just emerging from that and it's still wobbly.

Pete Walker says CPTSD is often misdiagnosed, and I can quite believe it, having been misdiagnosed and dismissed multiple times by GPs and other NHS services.

Me too. The most harmful was misdiagnosis with schizoaffective disorder a couple of years ago and being given heavy-duty psych meds against my will. If I hadn't left the country I'd still be forced to have a needle every month and two lots of pills every day (they did regular blood tests to ensure the latter).

On his website, he says: 'In my experience, many clients with Complex PTSD have been misdiagnosed with various anxiety and depressive disorders, as well as bipolar, narcissistic, codependent and borderline disorders.'

Let's not forget 'mood disorder', which my long-term GP diagnosed. I've accessed my medical records and it's distressing to read what all these experts decided about me.

There are probably multiple reasons for it [CPTSD] being banned from the text books.

For the majority of psychiatrists, if it can't be treated with pills it can't be acknowledged as a problem. And that has made me wonder lately what I want and expect from further therapy.  The therapist who identified CPTSD for me was an EMDR practitioner. I believe it's worked for a lot of people, but two years of it did nothing for me -- and that was before Dad died.

So I'm not that bothered about this latest round of therapy -- which is just as well, because they're clearly not in any hurry to get to me. At this stage I think I'm going in to educate, quite a defended (defensive?) position. The last thing I want is to have them open up my can of worms then say: "That's it. Your six weeks (or whatever) is up. Good luck!"

[Blueberry]

Candid, and the rest of you in the UK, it sounds pretty bad! I'm so grateful that the country I'm living in seems to have more clue, and pays for more. I have been misdiagnosed here too but only by the occasional T or psychiatrist who came my way. I left, moved on to somebody different.

Once while  in the UK I spoke to NHS and didn't say C-PTSD, but Type 2 Traumatisation and they understood...

(Abridged for personal reasons)

[Candid]

I spoke to NHS on the phone and didn't say C-PTSD, but Type 2 Traumatisation and they understood.

I had to look up Type 2 Traumatisation and found this: http://traumadissociation.com/trauma-abuse, from which I quote: More often occurs in combination with other traumas or cumulatively (known as "polyvictimization"). Poly-V is new to me, and maybe therapists here will understand Type 2 rather than C. Thanks for that.

I'm going to delete this post in a day or two because I don't want it on here, revealing who I am, at least potentially.

I haven't (yet) mentioned the country FOO are in, which I fled from to the UK last August in order to get away from the enforced meds.

Candid, and the rest of you in the UK, it sounds pretty bad!

Pretty much everything in my last post happened Elsewhere. I'm very grateful for the help I'm getting in the UK with my acquired brain injury... acquired Elsewhere, that is. The Elsewhere health system completely ignored the fact that I'd just had a severe blow to the head when I fell into their clutches. :rolleyes:

[Blueberry]

I stand corrected, Candid. It's great if you're better supported in the uK than it looked at first reading. Thanks for the link. In my country there is some talk of Type 1 and 2 but I don't have an English-language link.

Don't mention the country FOO are in just to keep up with me!

Since your orginal post was about your long wait, I hope the wait turns out less long than expected and that you make some headway with Type 2 as a descriptor. 

[Candid]

In my country there is some talk of Type 1 and 2 ...

Sounds like it worked in the UK, though. From now on I'll be saying Type 2 trauma, aka Complex PTSD.

There are more and (so far) better services in the UK than where I come from, but there are also a lot more needy people which means the NHS is desperately overburdened. I know there are people in more desperate straits than I am; I see them on the streets, huddled in blankets and asking for "spare change". Even so, I'm hoping the trauma therapy will come up soon after the ABI group finishes; I need to be earning! Eyessoblue gives me hope of that possibility.

Thanks again for your support.