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Complex PTSD and no help available
wildlife
Member Posts: 1,316 Pioneering
I need some advice please. I have been under the mental health services for years after experiencing many traumatic events throughout my life. I recently had an assessment done by the local IAPT service who said they couldn't help as my problem was outside their expertise. They wrote to my GP who I went to see expecting to be referred to a different mental health service. She said she would make some enquiries and get back to me. She rang today to say there was no funding available and that my only option was to go private. I cannot believe that is my only choice. Apart from wanting help to overcome the way this condition limits what I can and cannot do, I also need a diagnosis in writing for benefit purposes, which I have so far not got as the letter IAPT wrote did not suggest any diagnosis. Even though I was told verbally during the assessment that I have Complex PTSD. Can you suggest any way I can move forward without having to pay a fortune for the long term councilling treatment I've been told I need.
Replies
I have not been given a diagnosis of CPTSD,though I know I have it .I have just finished reading a book by Pete Walker on this subject ,now I really understand what has been wrong all these years.It is a really enlightening book .
I just went to my GP years ago and just asked to see a psychiatrist as I thought I just had PTSD,my Gp at that time didn't hesitate to contact the relevant people for me.
What are the protocols concerning NICE and funding about seeing a long term councillor or psychiatrist in your area ?,
I had a very personal letter given to me when I was seeing the psychiatrist about my life,and what I was going to do was hand it to the tribunal clerk at my PIP hearing,though it never came to that as I was awarded my PIP enhanced reinstated after a letter to ATOS medical team and my MPs help.
@jose2
Forgot about MIND,that would be a good place to start ,they know all the ins and outs and who could put you in touch and specialises into this disorder.
I had this trouble with asking for help with my lupus years ago,the GP said there wasn't a rheumatologist in my area or hospital ,so I went on the lupus site and spoke to a nurse ,who gave me the name of a lupus rheumatologist ,said he had worked in my area for years.Its not good when you have to do your own detective work and then inform your own GP that you have a name and would like to see them .Don't give up! and all luck with this
A lady I know has been treated for lupus for many years at a London teaching hospital.
Unfortunately if someone lives outside one of the major cities they often have to travel a long distance to access a specialist department.
I'm sorry to hear about the problems you're having - it certainly does sound like a stressful time.
@RebeccaMHadvisor, can you help?
I'm so sorry I haven't been on line for the past few days but the one thing I love about this community is the way everyone rallies around and supports each other.
I completely agree with you that you should never have to find your own treatment and do the research that you are currently undertaking. However, due to the way the NHS is funded we are in a 'lottery' situation and I regularly write to the Department of Health and Jeremy Hunt MP about this very issue. Mental Health services are stretched across the country and your struggle to find the support you need and rightly deserve isn't uncommon but I know that this doesn't help you right now.
Can I ask if it is your GP who is asking for the information on the Primary Care Liaison service? This link will give some information that your GP should find useful. From what you have said I think that Fountain Way, Salisbury - Sarum Primary Care Liaison and Memory Service (01722 820100) will be your closest but your GP should be able to make a referral from the information in the link.
Have you had a look at the Rethink website? There are some support services that are listed on here, however in my experience it is again a 'lottery' or services and some are very strict as to who they are able and not able to support for funding purposes. Some of them may not offer the documentation that you need for the DWP but they are able to support you and perhaps give you advice in how to get the correct documentation needed.
What you are going through is clearly stressful and frustrating and it sounds as though you are very focused on getting the help you need but please remember to look after yourself.
Rebecca
I completely agree. It makes my head spin at times. It sounds as though your GP isn't very experienced perhaps. I have had dealings with GPs who really do try and be supportive but have just ended up confusing the situation and doing the exact opposite of what they were trying to do.
Clearly the support your GP is trying to give you is not the right support and other options need to be either explored, or your GP needs to talk to you about why these options are not options.
I think you perhaps have two ways forward. The first is to ask to see a different GP explain the situation, explain the support being offered to you and the reasons it isn't right.
On this chain alone there are lots of links and things people have suggested as well as the support you have both found through your own research and the support discussed other agencies and this might confuse the issue. I would start by just giving the GP this link - http://www.awp.nhs.uk/services/community/primary-care-liason/
This details all the information they will need about the liaison service. They will know the area that covers them and will be able to look at the options.
The other thing you can do is to write a letter to your practice manager at the GP surgery saying the same thing. The receptionist will be able to tell you who that is or you can just address it to 'The Practice Manager'.
In terms of the Rethink website I have given you. There are 16 pages of support there but it is in alphabetical order and not location or type of support. Try not to get overwhelmed with it. Sit down with a cup of tea and give yourself time to flick through it. You will dismiss most of them as they will be in the wrong location or not be the right type of support so 16 pages very quickly shrinks into a more manageable list.
By all means ring the number and ask for their advice, I don't think they are part of the IAPT service but to be honest I'm not sure of the structure.
I hope I have been able to be a little more focused with where to go next.
Rebecca
Annoying though it is, if you can afford it, it might save a lot of time and hassle if you refer yourself to a private hospital that takes direct patient referrals and get the diagnosis you think you should have. Nuffield Private Hospitals (and I dare some other private hospitals) will accept direct patient referrals and will give you, as long as you ask, a list of costs in advance.
Would depend on how many consultations you would need. If you'd only need one to get a diagnosis, cost would be a few hundred pounds.
I am really sorry to hear that. I think that speaking with the PALS service is important. I know that this won't change your situation but it is important that the NHS receives feedback.
I am wondering if you have also considered speaking with your MP. You can either write or email or they will also run surgeries usually once a month where you can go a long and meet with them to talk about the issues.
Rebecca
To bring you up to date, I rang PALS again and after making some enquiries I was advised to ask my GP to apply to CCG a panel who sit every so often who have access to special funding for people who can't get treatment under the NHS in the normal way. I have asked my Doctor about this and she said she could try but doesn't hold out much hope as there are others with similar problems. I replied "What, with 40 odd years of Trauma?". She was very interested in how I'd found out about this option and I don't think it would go down too well if I contacted my MP. As she is good with me about other things and even about my mental health apart from this I don't want to spoil our relationship. However I've been getting worse lately and having trouble controlling panic in particular which is horrible, when I ask myself why, I know it's because I don't have mental health support I can call on if things got too much. I want to get better and still can't understand why someone with a worse case of CPTSD than most other people, which appears to be the situation I'm in, should be denied help when milder stress and anxiety symptoms are catered for with no problem. It's like treating someone with a cold and telling someone else with cancer there's no funding. It doesn't make sense.
Thank you for the update and I am sorry that you are still not getting the support that you need and deserve to have. It sounds as though things are still very difficult for you and I understand the predicament that you are in. Whilst your GP is supportive of you it is important that you get the help you need.
I think that the fact that she is willing to try is a good thing and perhaps in speaking with your MP you can express the support your GP is offering and that the help you are requesting is focused on the panel and not her?
I hope that the panel works out for you
Rebecca
Thanks again, Pat x
I sought a private psychiatrist who deals with this condition, however at £180 for half an hour was getting quite expensive. At my second visit to him, I told him I didn't want to start something I couldn't finish. He promised he could help, so I saw him five times, then I decided a just couldn't afford it. He then suggested I pay towards the hire of the room and he would continue seeing me. I said yes as long as it wasn't £180. Then I get an email of his secretary saying it would be too complicated to see me this way, and that I should find a local counsellor to OFFLOAD, as I didn't need to see a psychiatrist! I was disgusted with her an him! I'd traveled an hour to Warrington to see him and didn't claim traveling expensive , and for them to offer me a compromise which then is withdrawn, left me feeling rejected! So I'm now back to square one! Plus I've added another trauma to my very long list of traumas!
why the hell to these so called professionals diagnose people with a condition that there is no treatment for? Why is there no help for us? So,diets get help with PTSD , yet civilians with the complex condition get nothing!
ive googled for months to find someone to help, I've tried to remain strong and put on a front for family and friends, but I'm dying inside! My physical health is getting worse too which also impacts on my mental health, yet I'm left to deal with my feelings on my own! I can't talk to my sons even though they are adults, they just wouldn't understand. Now I'm sad to say, that ever time I go for an operation, I hope I don't wake up! I feel really bad about saying that, and I know that there are people in this world a lot worse off than myself, but that doesn't help me in my situation. I know everyone has their struggles and difficulties, but we all seek help from another person, all living in the hope for a happier healthier life!
i don't have proper mental health support because there is a shortage of psychiatrists and nurses. I'm having to rely on my sister who is my first port of call, but she lives in Manchester. So my two friends have been a great help. Unfortunately when I'm on a downer, they are stuck as to what to say to me!
so if @wildlife has any suggestions I'd be grateful, or anyone else for that matter?
thank you for taking the time to read this, sorry it's been so long.
I know it's not the same as seeing a psychiatrist, but if you do need to talk to somebody about what you're going through, The Samaritans really do offer a great service. They're always reachable at 116 123 or [email protected]
I also hope you know that you can talk to the Online Community at any time and we'll do our best to support and advise you.
also my team have never gone down the route of complex ptsd, And to be honest they wouldn’t know where to start! They’re absolutely useless!
as for your suggestion @pippascope of the Samaritans , well what can I say??? I rang them up regularly at one time, but you get a different person every time , hence you have to repeat why you feel like you do.
i rang once and started telling this guy why I was feeling the way I did , and he stopped me mid sentence and said ‘ is there a point to this story?”
i was disgusted !!! And since that night I’ve never rang Samaritans again.
i do feel desperate at times. I’m not on any medication as I came of antidepressants 7 yrs ago after being on them for 27.!
to be honest, as mental health is an umbrella term, nobody can understand how the brain really works. We are all different, who is normal? What is normal? We all react differently to what’s going on around us. We look at each other and wonder what that person is thinking, where they’re going and possibly what they’re having for tea?
But when a person has had trauma and abuse since the age of 5, how can someone ‘ treat’ that person when they’ve not gone through it? How on earth can they understand?
i was raped by Ian Brady when I was 8 yrs old, I never spoke to anyone other than my mother that night, until I was 14 yrs old!!!! I hate myself that Leslie Ann died months after, Why then I question am I still here???
then I try and seek help from my so called mental health team and they ignore me.! They don’t help, why? Because they don’t believe me!!!!
then to add insult to injury, they go and dump that horrible mans ashes in the sea where my beloved husbands were put! I really cannot come to terms with it!!
Move had many traumas in my life since then, but how the hell can anyone help me get over this if they didn’t experience that horror as an 8 yr old to the most notorious fiend that ever lived ???
ive even emailed those counsellors called the speakmans and asked them if they can help? But you know what. I’ve not heard a thing!! Obviously they just want TV fame?
im very bitter, very hurt and very angry! So I’m left to deal with my feelings. I’ve self harmed in the past, taken overdoses and got absolutely drunk to try and blot everything out.
no amount of pills are going to help. I’m told that complex ptsd is not a recognisable condition , only ptsd is?
seemingly they’re still researching the complex part?
so I’m sorry if I’ve upset anyone with my story, but Samaritans don’t help and I’ve tried other organisations of adults being assaulted in childhood. I’ve got a rod to bear, a heavy weight on my shoulders and no one can help!
note to @pippascope , could you please delete my membership as I can’t gind a way to do it. I’d be most grateful
I will email you about deleting your membership.
Thanks,
Alex
I myself have been told I have CPTSD by a local psychoanalyst, but have been told by the mental health team that they don't like to do an official diagnosis without offering a suitable therapy, which isn't helpful for an ESA claim.
Perhaps a bit more connecting up is needed here by authorities. To be honest we probably need a new Minister to oversee mental health, and trauma specifically.
The main thing not happening yet is everyone feeling they will be cared for and not lost through the net when they have complex trauma which is difficult to treat.
It gave me somewhere to go, social inclusion, other service users to talk to, informal interactions with staff, a 24hr telephone/face-to-face open crisis clinic, a kitchen, "art room", tiny garden, cards and boardgames, exercise balls, a really dodgy billiards table, and help with housing, benefits, etc. There wasn't any therapy (I got 10 hours) or psychoeducation, but it was helpful nontheless. I went whenever I could, and the Service even paid for a taxi if my back went into spasm while I was there. I was supposed to get a care coordinator and a care plan, but that never happened. I did find it useful, as before that I'd been almost completely isolated.
Then, in 2014, they gave us 2 weeks notice that the service was closing (to save money), and we'd all be discharged to our GPs. There was disbelief, panic, fear, anger, and a lot of self-harming. They were transforming the service to focus on the locked 10-bed BPD ward at the hospiral, and to provide Mentalisation-Based Therapy ("evidence-based", with measureable targets, for new patients. "Crucially, none of the 80 service-users from Lifeworks would be accepted into the therapy programme for 2 years, as it would be hard to fit us into the statistics.
It turns out that they hadn't done any risk or equaltyi assessments, hadn't consulted with service-users, families, or other stakeholders (GPs, the hospital, the crisis team, community services, A&E, the police, ambulance services...) They'd basically just written us off, knowing that a lot of us would get worse, and a few would probably suicide. We were the old toys, and they dumped us so they could focus on their shiny new toys.
This was unwise of them. Callously abandoning 80 people who are extremely sensitive to abandonment, convinced that nobody cares about them, and liable to outbursts of anger.... What did they expect?
Apparently they didn't expect us to take over the building on the last day, barricade ourselves inside, maintain a constant presence of at least 4 people in the building at all times for the next 4 months, and make an enormous amount of noise and publicity about the whole thing. People dropped food and money off for us, signed our petitions, came along to our demos, etc. GP's, A&E, crisis services, the police (who we informed of the situation - the Trust hadn't bothered) supported us, wrote to the newspapers, joined us on local radio, etc. Unite, Unison, and the TUC helped us to organise, gave us access to lawyers and people who understood the regulations, got us in more newspapers and on TV. The BBC filmed us twice (http://www.bbc.co.uk/news/uk-england-cambridgeshire-28079396), our MP came to see us and gave us his support, mental health organisations across the UK contacted us on social media and spread our story, and 7 of us went to Parliament and met with the Shadow Health and Mental Health Ministers.
The Trust threatened to send the police in (oh yeah, so they could be filmed forcefully removing a bunch of mostly-female, mostly-disabled, mentally ill service users from a Trust building - when we pointed that out, they backed off). They worried about health and safety, so we got the fire department to come and inspect us. They threatened to sue us for trespass, and we looked at them and laughed - almost all of us were impoverished benefit claimants.
Eventually we discovered that the Trust hadn't bothered to do a risk assessment, an equality assessment, or any kind of consultation. We reported this to a regulator, who called the Trust onto the carpet, gave them a serious dressing down, and instructed them to do the assessments and to work with us to reach a compromise. They eventually agreed to continue Lifeworks for 5 more years. 😁
They've been slowly draining resources, time, money and staff from us for a few years, we don't have much time left, and none if us who participated have gotten any services since the agreement, but we're all really proud.
And then I found out about
C-PTSD, and was instantly sure that I'd been misdiagnosed. Asked my pain psychologist, my psychiatrist, my (charity) counsellor, and my (charity) group therapy facilitator, and they all said something like, "OMG yes obviously!" So I've been rediagnosed, only to find that there isn't any treatment available on the NHS here, and the CCG won't pay for me to go elsewhere.
My psychiatrist pointed out that BPD therapies often work fairly well for people with C-PTSD, so I was
re-rediagnosed back to BPD, and hmy psych referred me to the BPD therapy programme. It's been 8 months now, and everyone else on the waiting list has started their treatment. I'm pretty sure that I'll never get treatment from the Service.
My counsellor is trauma-informed, we click really well, and she sees me for £10 a week, but she doesn't know much about treating C-PTSD. She is the one who has helped me to be able to identify the abuse, neglect, and trauma woven through my life from the age of 3 (~40 years, like you). There's rather a lot of it. It's not that I repressed it, or forgot it; I just put it away in a dusty corner of my mind and didn't think about it for years. However, losing my whole life when I became disabled; caring for my Surrogate Mum through an illness that was finally diagnosed as terminal cancer days before she died; having to cut my abusive Dad out of my life; being drugged, taken from the wake I was at, and raped multiple times; becoming homeless; and the constant churn of applying for benefits, being reassessed, losing my benefits, fighting back, racking up debt, dealing with the DWP's staggering levels of incompetence, and dehumanising lack of interest in what it does to use, waiting for Tribunal, getting my benefit back, and then waiting for that next brown envelope
Our interactions with the DWP could have been created for the express purpose of retraumatising claimants, a population who are highly likely to have experienced multiple past traumas.
A prolonged experience which is very stressful, frightening and/or distressing, involves danger to health or life, no escape from situation, caused by humans
Hi everyone - firstly for all those CPTSD suffers on here I'm very sorry for what happened to you in your childhoods then left you with your condition. I was recently diagnosed in May - have had various therapies for depression/MDD etc in the past, none have worked. Since my diagnosis I feel my recovery is starting to begin (at age 50 and at the cost of my marriage). There is some very good literature out there - google Pete Walker CPTSD, his website and books are brilliant. As well as therapy he recommends 'bibliotherapy' - books to help you understand the condition. I would also recommend 'the body keeps the score', 'healing the shame that binds you' and the 'the drama of being a child'. The first steps which can be guided by a therapist, are to work in silencing the toxic critical voices (internal and external) and then to move to being able to re-parent your younger self. It sounds a bit odd but it does work - I was abused by both parents (sexual, physical and mental), a doctor, priest and bullied at school. I can now link some of my emotional flashbacks to specific events in my childhood - so those disassociated lost feelings you have, are the legacy of coping strategies as a child.
Recovery is a multi-facilitated approach - unfortunately I don't have a loving supportive/understanding partner. So I've built my own network, therapist, friends and none-triggering family, plus yoga, exercise, reading, mediation. it's a lot of work but I do feel different and you can feel and think differently (I can recommend cd/s apps by Mark Grant - good for night time listening when struggling with sleep).
There's an absolutely dearth of understanding and support for what is probably one of the most widespread mental health issues in the country and all a consequence of poor parenting.
Some support groups would be really helpful and this is what I've been looking for.
Just to finish - above is my experience and what is working for me. Best wishes to everyone.
its about my own battle to get MH treatment.
Dont give up fighting x
Child abuse survivors frequently are self sufficient, functioning, hard working and do not fit any known mental health 'illness' category. They are torture survivors.
They are harmed, damaged, hurting and failing to experience joy in their lives, but they are not clinically depressed, nor suited to any other neatly fitting mental health label.
They are certainly not automatically taking drugs, being criminal, abusing their own children, failing to work and function, weeping, or showing their emotional pain (or, often, their physical pain. )
They learned early never to cry out, never to expect help from anyone in their world, never to ask for anything, never to waste their attention on 'feeling' or even identifying hunger, pain, or needs of any type. If they survived at all, then whatever didn't kill must have made them strong.
But they are isolated, often re-abused due to having no knowledge or practice of who to trust and mistrust, how to form close confiding relationships even with their own children, whom they usually raise with greater care than average.
(Think about it.... assume you are even more resolved than an average parent to ensure your own child has a perfect life, no matter what sacrifices to your own comfort or happiness. You don't know what a happy well functioning family looks like, but you will work till you drop to do everything you can think of to make your child's life free from anything like yours was.
The last thing you are likely to do is reveal the cesspit of tortures you went through, to your darling little angel-face child. Said child will soon sense you are keeping a lot hidden. Being secretive will alienate the beloved child, who matters more to you than anything in the world, certainly more than your own life. Soon, your child, too, will reject you)
They
Survivors of extreme child-then-adult abuse could really do without being repeat-excluded, re-traumatisingly repeat-rejected, especially by officially sanctioned power-abusive organisations. From birth, they may have been forced to accept they are somehow 'lesser' creatures, not really supposed to exist, not worth rescue, consideration, protecting or saying a kind word to, not as important, or even as fully human, as others.
It is cruel to realise that in all official systems, extreme abuse survivors are not fully compliant with the tick boxes.
Therefore, they are effectively 'deemed' NOT to exist.
...............Therefore, they ought to Stop It At Once (!)
But for some reason the u.k. mental health industry insists on sticking labels to inform torture survivors they are all crazy.
The Rich organisation looks interesting, (as is the fact NICE declares there is no such thing as treatment for what is problematically misnamed complex ptsd. ) It's a pity the RICH philosophy (that it might be good to behave with people as equal human beings) is confined to them, and that they are in USA.
DESNOS (and other ideas) are suggested as a better label than ptsd, which is ' much too inadequate a description of the complexity and magnitude of effects of torture, ......which is 'severe pain or suffering, physical or mental, intentionally inflicted. ....with ...aquiescence of ....an official' ' U.N. '84.
Standard "treatment" designed for mental illness is highly counterproductive. ' (Mollica 89) (NICE 2018)
Social contact with those with fellow experience is a help. Identifying and reinforcing the existing survival strength, and talking on a basis of equality helps.
(I. E. The exact opposite of a mental sickness industry professional taking the enjoyably lofty position of power over the victim, which harms, by reproducing helpless power imbàlance and control).
N. B. How much equality of power, and respect, is involved in the mentally sick-industry- professionals' routine ? ...... Summoning to a venue chosen by the power holder, at the time dictated, for the duration dictated, for as many 'sessions' as the power holder dictates, and after a waiting period dictated. ..
.........Would that restore the victim's self esteem, sense of control, of self, of exercising healthy balance of power in relationships? Or, would it be calculated to reduce it?
The aim is not to 'correct the faults in the crazy person'. On the contrary, it is to emphasise the non-craziness of living through extreme and prolonged and repeated abuse.
Identifying, encouraging and supporting the individual's own interests, wishes, needs and goals to enjoy a fuller life, closer to the inherent potential if the extreme abuse had not happened, is what helps.
TW
Complex PTSD IS a disability, it isn`t veterans who are affected, but they might be affected, which may be underlying PTSD. In Complex PTSD, trauma occurs in individuals when attack or abandonment triggers a flight and fight response, in childhood environments, which they can`t turn off. It is a severe form of post traumatic stress disorder, and there are symptoms to be managed. Often UNWITTINGLY caregivers, in environments, (because of their own unhealed traumas in childhood), can traumatically abandon, neglect, or verbally, emotionally, physically or sexually abuse children, who then develop Complex PTSD... Many caregivers ARE doing the best they can with the knowledge or emotional tools they have been given, however, some react angrily to a baby or toddler`s calls for connection, attachment, and normal development, then, frightened by a response, children can become stuck in the adrenalized state with a sympathetic nervous system locked on. Some children are bullied and hurt at school, so, many remain hyper vigilant and can suffer from CPTSD. It scars and affects the brain.
In my 70 years experience of trying to get care and services through the traditional, medical model of health, which individuals in the Western world are referred to, GP and referral to mental health services is productive usually if one is willing to have the `symptoms` of Complex PTSD, repressed, with medications. Like I was in the 1960s, with Valium or Stellazine, which gave horrendous side effects and addiction, and iatrogenesis resulting from activity of persons acting as healthcare professionals, purporting to care for individuals, assuming they are. Then onto pain killers for migraine, which unwittingly suppressed the symptoms of CPTSD, and when I came off them, I had discovered I been addicted to them, then, all the `Symptoms` of CPTSD arose. Rarely do you get good help from GPs, who are the gatekeepers of the big pharmaceutical companies. A GP or psychiatrist is trained to DIAGNOSE, then provide the chemical cosh to quell `Symptoms`, and all the NHS services are geared around keeping you suppressed and quiet. If that is your choice it is OK. If you don`t want to take the medication they can section you, under the auspice of, for your OWN GOOD. It is NOT !. People behave in certain disturbing ways because they have been traumatized, they don`t need re-traumatizing. They need calm understanding and positive regard.
One of the MAIN POINTS in a post by Jeremy J, on this site, hits the nail on the head.
MOST mental health issues in the country are all a consequence of poor, traumatizing, neglectful or abusive interaction in environments, Or injury to the body in some way.
This is why ALICE MILLER, psychologist, in many of her books (e.g. For Your Own Good, The Body Never Lies, Thou Shalt Not Be Aware, The Drama of The Gifted Child etc), states there is much collusion to keep quiet the fact, the roots of violence, neglect and abuse in childhood, and that not good enough caretaker skills world wide, traumatizes children and it is endemic in society. That most of the health professionals have been actually traumatized as children, and it is that, the powers that be, want to suppress it, so won`t admit or cater for Complex PTSD. They daren’t, and if you get a professional to speak about it, they may lose their career if they are discovered, not toeing the offical line. Others can get angry at you. This is why society is in a mess, and there are a lot of suffering people, which is overwhelming.
PETE WALKER, (e.g. Complex PTSD, From Surviving To Thriving 2013) is brave indeed. The book is informative, and a brilliant resource. Many adults, who have been labeled with many things, (not treated as an individual or lovely person they are) and said, by medical model of health, to have mental health issues, per se (like blamed and shamed once again, by them, re abused, assuming symptoms just come out of the blue, or fall on you from the sky), and only prescription medication given, are only just learning about CPTSD and its effects on them.
Many adults who have not been understood have suffered at the hands of the NHS or medical model of health.
The body Speaks Its Mind by DEBBIE SHAPIRO, All Alice Miller books. (Miller actually resigned her post as a psychologist, because she said, there is a major cover up and collusion in the world, about traumatized children which has implications for adult health), are other resources. HOWEVER, like me, one can read and research all, and learn to meditate, and reach out to others etc, but in the end one needs genuine support and someone to be contactable in a moment’s notice, when in emotional flashback, which after stopping all medication 20 years ago, for me is often, (because was not ENABLED to deal with CPTSD by any health service or otherwise), and have no-one to help me, because after years of knocking on doors, asking GPs or therapists, ( who got angry at my suggestion of CPTSD or whose eyes glazed, at a moment’s notice, because they had probably been traumatized and we were having a transference-projection episode), and who wanted to channel me to NHS or make me take medication for CPTSD, who just would not offer anything else, because there was nothing for CPTSD, in their diagnostic computer.
BASICALLY, for society, there are so many people suffering from CPTSD, mis-diagnosed often as something else, so a GP can put them on medication, to suppress the symptoms, not deal with the cause, or the whole person humanely, trauma, neglect, or abuse in childhood.The cause of dis-ease.
Recovery or management of the brain that has been hijacked into Fight, Flight, Freeze or Fawn mode, at an early age, and can be triggered by things in the environment, has to be a multi-facilitated approach, IF ONE CAN FIND, an enabling other or group. I live in top north of UK and resources or groups are nil in this area. Therefore, it has been for over 40 + years, self help or nothing. It feels awful and at times scary.
The Mind website mentions that N.I.C.E. guidelines state there is N O treatment or drug for so called Complex P.T.S.D. They add a warning that whatever drug or treatment is considered appropriate for ptsd, is not only N O T suitable for complex ptsd, it is likely to be harmful.
The term Complex Ptsd itself is now controversial, being considered misleading and unhelpful, because there is only a passing resemblance to 'conventional' P.T.S.D.
The O N L Y thing found to be of help, is to have regular contact with a group of people with similar past histories. That needs arranging and facilitating. But outsiders, who cannot possibly comprehend, can only alienate and hurt survivors.
Any implication that the survivor is crazy and needs to be medicalised and labelled is extremely damaging.
Prolonged years of fearing for life, trapped in helplessness against extreme power abuse, are re-enacted, not remedied, by imposing any unequal power relationship. Such extreme torments are isolating. Isolation requires remedy by contact with others whose past experience was similar enough to make them 'one of us', i.e. people who can comprehend, even without needing necessarily to talk about what they had in common . I
Ex-Concentration camp survivors and other prolonged horror survivors felt at ease together, in a way they often couldn't with outsiders . Dragged still alive from piles of corpses, they might have benefitted from food, clothes, attention to wounds.
Not, though, from someone rushing up with a bucketful of labels to hang round their necks, marked with various random mental illness names. Not, either, from being obliged to regard themselves, and forced to accept being regarded, and 'treated' as a wierd 'patient' whose 'faults' need correcting by a non-friend, non-available, impersonal professional.
Those pulled still alive from piles of dead bodies after the single incident of an earthquake will probably be more liable to conventional ptsd than the rest of the population. However, the majority will be resilient, and the best thing for them all, resilient or showing symptoms, will often be not talking about, or dwelling on, the single experience, merely being able, if they wished, to mention it in passing, to fellow experiencers, or to a general population who have heard about earthquakes.
An earthquake survivor will never fear being regarded as wrong, crazy, or lying. Nobody will silence him, nor disbelieve there is any such thing as earthquakes. Nor will anyone assume that even if there was some such thing, and even if the 'being buried alive' thing he mentions really did happen to him, he probably brought it on himself. Nobody will demonise him. Nobody will tell him he is mad.
The single, isolated person who has, especially in early childhood, been totally alone and helplessly trapped in years of exteme prolonged trauma, can only expect to be Silenced, Disbelieved, and Demonised . He will invariably be regarded as mad, abnormal, deluded, lying, outside the closed circle of the normal 'in-crowd' of the ordinary human race .
Have tried to get a referral to a Psychologist? They can take you through the Becks Scale and give you a score. With that you may be able to get an appointment with a Psychiatrist.
I live in London and know the NHS system very well, you won't find any help at all in the NHS for CPTSD. Not even for something as basic as anxiety, let alone complex trauma, considering the budget cuts in the past few years by the Tory government.
What the NHS can offer for ptsd is medication (not enough and not useful most times) and talk therapy (which is useless for trauma) - see The body keeps the score for thorough explanations on why that is.
The only way to get help is through private treatment but even then most psychotherapists and psychiatrists will not have heard of the latest developments in trauma treatment; they parrot the same old crap: psychotherapists can only offer talk therapy or superficial treatments of cognitive behaviour therapy, neuro linguistic programming etc which are useless for trauma.
Psychiatrists can only offer medication and more medication and nothing else.
So the way to healing is by finding private practitioners (which are expensive yes) that specialize in complex trauma and are aware of the latest research findings and treatments in trauma and use them in their practice.
I've started from scratch 4 years ago and gone through countless moronic hoops within NHS and private treatment so I'm speaking from experience. I wish someone had told me how to avoid all this crap and would have saved myself pain, time, huge efforts and thousands of pounds. I can't stress enough the importance of reading van der Kolk's book to give you a very good perspective on what you're dealing with and what are the treatment options available.
I wish you all the best, you can definitely treat cptsd. It is very difficult, but certainly doable.
If you have any questions, I'm happy to answer.
N.S.T.Survivors repesentatives reject the term D I S O R D E R. When being tortured, whatever response keeps you, the victim, alive is the perfect response.
Only those who speak the same language could even believe the response. How could they comprehend a tiny child attending first day at nursery school, who never cries, is instantly obedient, and never cries out in pain? Teacher instructs children to gather round the piano. He is first to obey, closest to the piano. She is a large lady. At the end of the lesson, she realises that the whole time, the leg of her piano stool has been crushing the boy's foot.
Obedience and never crying or crying out make good sense for any helpless prisoners powerless to escape, never believed, with nobody bothered, or able, to intervene. Nobody believes because nobody cares to. Calling the whistleblower crazy means colluding with the attackers. Disbelief is the worst reaction, and it is the main reaction enabled by a mental illness label.
A mentally ill label belongs with torturers, not their victims.
Where is their incentive to facilitate on line or other friendship groups of N O N crazy survivors who speak a survivors language which only their fellows comprehend?
Where is their incentive to advocate for people who R E S P O N D in ways which are merely a little unusual, not crazy ? The worst thing to do to a torture survivor is branding with a craziness label, inviting everyone to have open season on disbelieving the 'crazy person'. So, if the survivor does not burst into tears, or does not give evidence of pain, what is needed is a language interpreter.
She may need to report abuse and re-abuse. But she isn't sobbing, and if she is carrying a branding of craziness it confirms she must be lying.
She may be unable to force herself to go for gynaecologist checkups, meaning she now has the label of uncooperative. She may not face a doctor prodding at her and asking "Does this hurt?". She cannot scream out, she is overwhelmed by the conflict in her lifelong best practice of her never admitting pain, and struggling to breathe from the intensity of agony of what the doctor is doing.
If you 'speak the language,' you won't need it spelled out. Women's hairdressers invariably include hairwashing, in other words they instruct you the customer to go and lie back while water is poured over your head, your head is often firmly grasped and manipulated into the required position. This is Not Good, not at all good.
As a Survivor, you will be obedient and silent, even if it hurts, even if the trainee girl, who will have been told to do the chores of floor sweeping and shampooing, rubs your head roughly as if she is scrubbing oil off a car mechanic's filthy old overalls. Any other customer would protest. You won't. You go into automatic mode. You just grab breaths, cooperate, and wait for the nasty things to stop being done to you.
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Sometimes an inept junior may have the water at a worrying temperature, or pour some over your face or into your ears. Often a towel is pulled round the 'client/victim's' neck and another thrown over her head and often even briefly over her face. All in all, this amounts to a Really Bad Plan!
And, insult on top of injury, women's hairdressers even customarily expect to charge a lot of money, plus expect tips, plus expect compliments, after staging these pale but disturbing part-re-enactments of what people used to do to you!
Can you be surprised some Survivors prefer to avoid women's hairdressers? But are they crazy to dislike, and avoid, such places? Should they be taking medication, or being subjected to a talking treatment for curing craziness?
I don’t know if that’s quite the same but your post really touched me. I’m sorry you feel so powerless too @newborn
NSTD Survivors campaigners strongly reject the word Disorder. They say a response is not a disorder.
They say prolonged torture especially from childhood is N O T Abuse, it should be named Torture [removed by moderator]
Today a thread someone posted on this site was called Feeling Low? Read this. It was joking, not a true story, but it held a truth. The gist was about a ptsd-labelled soldier who fell down a hole, and the conclusion was that only a fellow survivor could help him out.
Pandora's Aquarium is a member site, with public posts too.
I do agree with the reasons the NSTD campaigners say that about the word disorder, I think it’s an appropriate reaction and understandable given circumstances rather than a ‘disorder’.
I’m not sure if the rest of your post relates to you or your experiences, but if even a small amount of it is, I’m so very sorry for what you endured.
I did read that “feeling low” thread and I agree, it can take someone else to be in the hole to help you out of it because they’re the only ones that could ever really understand how you might, on any level, be feeling.
I've not really contemplated the use of the 'D' in PTSD before, nor the points you made about compliance.
Thank you for sharing.
Hi @cat19,
Thank you for your offer of advice. It's very generous. It's a shame so many people in these situations are struggling to find the right support on the NHS.
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What do people think of replacing the confusing terms low self esteem and low self worth, for a certain group who have a different situation, one of poor sense of E N T I T L E M E N T ?
People treated as less than equal, as not important, as not counting, will eventually get the message that unlike the rest of the population, they don't matter.
Nobody cares about their existence, let alone their happiness.
They will tend to give way, try to earn a place in the world by working hard, giving and not asking, helping others and never expecting help. They respect others, but never express their own wishes or likes. They don't stand up for themselves.
I’m so sorry if you feel the same, it’s not a nice place to be.
It must be equivalent to pumping insulin into a non-diabetic.
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@newborn I had a massive panic attack the last time I tried to have a cervical smear. It lasted 2 hours, until they stuffed me full of benzos.
Sadly there are huge waiting lists for mental health support, but I'm glad your GP is trying to get you some help. I haven't heard of Wellies before, you'll have to let us know how you get on at the group.
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Message to Waylay. The post about the distress of being subjected to official interrogation makes perfect sense. There is no equal power balance. The individuals who operate the system can choose, if they wish, to harm you. Even demanding all your personal data is not a comfortable situation. You have no knowledge about them (not that you would want to), but information is power.
All power tends to corrupt, absolute power to corrupt absolutely. Any rich powerful man is likely to believe he is entitled to have everything he wants. Any battered beaten cowering powerless woman is likely to believe that protest is unsafe, and that her life or death, let alone her likes and dislikes, are irrelevant and meaningless.
For many of us, people who have had power over us have used that power to damage us. Of course we don't find it easy to re-live or re-experience any power imbalance.
Being in a supermarket buying some food is a perfect balance. You choose when to go, where, how much to spend, and exactly which items suit you best. The cashier will take exactly the correct amount. They won't be in any way unpleasant to you, nor you to them. Nobody can force you to do anything you don't like, nobody has power to harm you at all. It is perfectly safe and there are even professional security guards who would, probably, come to your rescue if a fellow customer decided to attack you.
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After the war, for years, some couldn't always stop themselves doing the automatic response if a car backfired. Perhaps to the end of their lives, they would be unwilling to attend a fireworks party. Maybe they avoided crowds, confusion, traffic noise, situations where there was a resemblance to a chance of suffocation, thirst, hunger, cold . Maybe they avoided close relationships after so many best friends had died horribly. Maybe they didn't explain to others the reasons, and maybe they didn't even realise it themselves.
Going through battlefields was bad enough at the time, so their brains did the sensible thing to protect them by closing out most of their memories. It wouldn't be Therapy to try to force them to re-experience the unbearable, and to chat about what emotions they were supposed to have been experiencing throughout all those horror years.
But it would be unforgivable for any doctor to brand them with the label of Crazy, just because were unusually and unnaccountably averse to noise and other things.
TRIGGER****
Not self harm or attempt suicide. I do have a lot of diagnosis, and some of which confuse me greatly. I have been told under the umbrella of CPTS(D) that I also meet the clinical criteria for BPD. I suffer greatly with Dissociation but have no real understanding of it. I look at PODS website and it talks of OSDD and DID, but I feel that OSDD does not really fit. I have a thing about names, as in, I do not identify with any. Therefore, my critical child or as I label them, younger me, child at 13, 19 etc, do feel very separate from each other, but are not named 'ROD JANE AND FREDDY'. I feel I am miss or over diagnosed and I feel that the treatments that might help, (DBT) (EMDR) are not available to me. One because it is only offered in a group session and I am totally unable to do this as I dissociate in groups and the other because I don't make eye contact. I am in my forties, room bound and feel totally isolated and non-existent. I lost a career I adored due to this condition. I don't know if anyone else on here can help by explaining their dissociation and if they feel the CPTS(D) with dissociation doesn't seem valid?
We are not mental health professionals but if you feel we could help in anyway then please do let us know
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It also though happens on a daily basis to a lesser extent. I might be aware but feel like I’m detached from the situation. It leads to me doing things the ‘now me’ wouldn’t do. It seems in those moments that what I do is to someone who is not me. Consequently I have caused myself injury. I feel anger at times that is feral, but sometimes it’s like it’s not mine.
I do drift off into somewhere on other occasions and my daughter or husband frequently tell me something they claim they have already told me. I am completely unaware and I will insist it’s never happened.
I will ‘probably rightly do’ feel completely shocked or humiliated by some things I do in such states. Certainly my neighbours will have seen me in full flight out of the house (which I don’t do unless dissociated) in various states of dress!!! not good for them or me.
When I look in the mirror, sometimes I don’t feel the image looking back is me.
I lose so much time in a day from just being somewhere else. My husband says he can see it. I will appear almost trance like and I won’t hear him or speak back, I don’t know it.
I just feel that after three years, something should have improved. I don’t feel like I’m getting any better. I can’t stop these things happening because MH helpline is so slow to respond, by the time I might have stopped it, I’ve left the building, so to speak.
It feels like there is little on offer to help other than a weekly chat about how ‘badly’ I’ve been the week before. I basically just take pills, worry about when it’s going to happen again. It’s never ending.
Trigger***** my abuse was throughout my childhood but my memories are all over the place with many gaps. It was SA and emotional. I was also adopted and this added to injury thanks to the rejection by my birth mother at 19 who I think I thought was going to save me.
I never told anyone, I shut down emotionally. I don’t think in the 1970/80’s I would have been believed. I did try a couple of times, but it was not within my ability.
I to was a strong resourceful driven person. One day, something else happened. I was 45. (4 years ago). My world fell in and I have never got back up.
What you describe certainly does sound like dissociation to me and your response has broken a lonely day and was very helpful:)
Reading all posts, since my last post about Complex PTSD, saddens me how many are lonely and suffering in this western world, without genuine empathic and unconditional support, and are bound by the medical model of health, where pharmaceutical drugs, (with an iatrogenic factor, e.g. you take them for one thing and they give you another condition), are given, and that seems all there is for people on the NHS., because it is governed today by the pharmaceutical industry and GPs are the gate keepers of this business, trained to alleviate SYMPTOMS only, indefinitely. Private practitioners working in the field of traumatology are connected to clients needs and to finding the root cause of suffering, knowing how early emotional attunement of caregiver/mother and child, has implications for adult good health, and many of us have been affected negatively today. In fact the suffering is epidemic, but caregivers/mothers were only doing the best they could with the skills they had been given.
Complex PTSD is related to developmental trauma, (e.g. when children are exposed to major or minor traumatic emotionally neglectful experiences, with no comfort), which many clinicians and people in western society in general are afraid to acknowledge. However, developmental trauma now is pervasive, acute not understood or treated in a therapeutic way without pharmaceutical drugs. As Barry Weinhold says in Developmental Trauma (2015), a game changer for health professionals, if they were allowed to listen, (not part of their training for various reasons), that when a caregiver /mother dissociates or shows facial expressions & behaviours to infants that appear scary or rejective or dangerous, (briefly or constant) infants feel afraid, then the brain stem activates a protective response that causes them to retreat, and another brain signal, the mammalian wiring fires unconsciously telling the child to escape. So an infant or child psychologically dissociates and is anxious and wounded. The process affects the infant`s fragile brain and nervous system, and thereafter impacts adult health. But this is rarely discussed within the medical model of health.
As Rete made the valid point on their post, developmental trauma in childhood environments causes us to carry baggage from the past into adulthood and it impacts health. This is NOT acknowledged by the medical model, or if it is the chemical cosh shuts us up.
Holly G Cat`s post on 12th July expressed the concern that it is felt they have no improvement, and symptoms and suffering of the inner child suppressed with medication. Also saying CPTSD not categorised, by medical model of health. No it won`t be as it exposes lots of things. NHS expects OUTCOMES in all its approaches, and expects human begins to oblige, therefore the quickest and easiest, in a time based environment, an outcome is symptom suppression. Searching for a root cause and healing exposes many things about society.
Then when there are OTHER negative or traumatic environmental experiences in a person`s life it compounds the developmental trauma issue, hence CPTSD.
Waylay talks about challenging dissociation. DISSOCIATION via distracting activities or mental processes is only one of the symptoms of CPTSD, others are, EMOTIONAL FLASHBACKS (triggered in any environment), A TYRANNICAL INNER CRITIC, SELF ABANDONMENT (because we believe we are not good enough), ATTACHMENT DISORDER, ANXIETY (social or otherwise), TOXIC SHAME or GUILT, FEELINGS OF LONELINESS and ABANDONMENT the many other symptoms of childhood and further trauma. Staying indoors the scared inner adult - child feels safe.
FURTHER if as Holly G Cat fears they may experience, someone being upset by them being proactive in your health and healing, it is disempowering and, it reveals something about the so called care system and people in it. For example, the practitioners may be unhealed, (and have issues or baggage triggered) and the medical model of health, is authoritarian and controls the patient, with what they expect the patient to do, take medication and will frighten them into doing as their told.
The medical model and traditional therapies (like CBT), that are offered on the NHS, will usually give medication to suppress SYMPTOMS, leaving the ROOT CAUSE of our health issues untouched, therefore, we are not going to heal if we do not discover the cause of our suffering.
The goal of healing trauma, anxiety, fear, abandonment depression etc, etc is helping clients interrupt the fight and flight adrenaline cycle and modulate their sympathetic nervous system, with therapy sessions of nurturing, comforting, and understanding protective language which holds clients in a therapeutic experience for re-wiring of the neurons of the brain and healing. Or, outside of therapy, spending time in nature, all which brings the brain mind/body/spirit into present time reality, to process intense experiences, emotions, and suppressed energy in the body, by witnessing and surviving in a safe therapeutic space. Clients do not need re abuse or traumatizing, with invasive practices.
So those on the posts have said they felt they are not moving on in healing, this won`t happen until we get to the ROOT CAUSE of our distress and suffering. It is like peeling the skins off the onion, our issues are many layered.
It must be remembered NHS or conventional health services, for us conditioned westerners is, pharmaceutically and business driven, to suppress symptoms and get as many people as possible on medication. Everyone since the 1940`s and free medical care, (when all other complementary therapies and healing were outlawed in favour of NHS), is conditioned to go to a GP for a `cure` today, they will suppress/treat your symptoms or refer you to a specialist who will help with suppression of symptoms, after a short time based talk. Suffering, it is understandable we will grasp at anyone who looks like offering support, once in the medical model system or loop it is challenging to break free.
Also, many experiences and feelings of people who have been traumatized in some way, who end up at the GPs surgery, are usually pathologised, when in fact they are having a spiritual crisis, (or experiencing a dark night of the soul), which feels frightening, without appropriate knowledgeable support in transpersonal matters.
If any of you may want to try energy medicine, complementary therapies or transpersonal therapy, here are some of the methods for anyone to look at and ones I have used with some success, but it can cost and the allopathic orthodox-traditionally trained practitioner of today may not support your healing with these therapies and poo, poo, methods and your questions, (it has to be expected), if you ask them about these alternative approaches, so it needs to be a proactive role we take in our inner healing and searching out appropriate therapists for ourself :-
You can look at or search out Emotional Freedom Techniques (EFT) on the internet. EFT helped me, and I still use it often.
Book: The Body Speaks Its Mind, by Debbie Shapiro (1998)
Book: Complex Post Traumatic Stress Disorder, (leading Authority on CPTSD and sufferer) by Pete Walker MA (2013). He gives you tools for coping in the book, which was the first of its kind.
Book: The Tao of Fully Feeling, Pete Walker (2015)
Book : In Case of Spiritual Emergency,when there is no one to assist, Catherine G Lucas (2011)
Book: You`re Not Going Crazy You`re Just Waking Up Michael Mirdad (2013)
Book: You May Not Be Mentally Ill, Charles L Whitfield (2011) (Misdiagnosed and mistreated when adults are actually suffering from effects of childhood neglect and developmental trauma and other later trauma, so neuro developmental and patho-physiological results of growing up in certain environments affect their emotional and behavioural patterns and health. CPTSD is a normal reaction to an abnormal experiences.
Book: Healing The Child Within, Charles L Whitfield (1989)
Book: Healing Trauma (program for restoring wisdom to the body and exploring root causes of the symptoms, Peter Levine PH.D
Book: An Unspoken Voice of Trauma, Peter Levine (2010).
Book :Developmental Trauma (2015), by Barry Weinhold
Book: Stop Treating Symptoms, Heal The Hidden Cause, by Sandy C Newbigging (2013)
Book: For Your Own Good (the roots of violence in child rearing), Alice Miller (1983)
Book : Thou Shall Not Be Aware (society`s betrayal and cover up of the wounded child) Alice Miller (1990)
Book: The Body Never Lies (physical illnesses are the body`s response to disregard of its needs, and emotional neglect) Alice Miller (2005)
Try if you can to seek out a therapist or transpersonal therapist/counsellor/traumatologist or trusted genuine empathic other who can support your healing journey, which is your right. The way people are not being treated and supported empathically, is "Mans inhumanity to Man".My name is Di and I'm so glad to have found this community. I've just been diagnosed with complex PTSD as a result of childhood abuse and trauma. Hope to gain some support and insight into how others are coping and offer any support I possibly can.