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Complex PTSD and no help available

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  • newborn
    newborn Community member Posts: 832 Pioneering
    What an interesting post, thank you.

    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 .


     

       


  • PTSDdisabled
    PTSDdisabled Posts: 41 Connected
    Hi,

    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.
  • Cat19
    Cat19 Community member Posts: 5 Connected
    SurvivingTara is absolutely spot on! The best thing available out there on CPTSD, what it is, how it manifests and how to treat is is in Bessel van der Kolk's The body keeps the score. He's one of the top specialists in trauma out there having studies it and worked with it for many decades.

    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 ****: 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 **** 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.
  • newborn
    newborn Community member Posts: 832 Pioneering
    edited June 2019
    Cat 19 thanks for reply.
    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.

  • newborn
    newborn Community member Posts: 832 Pioneering
    Craziness professionals earn an income from craziness labels,  ( not paid  by results, either)

    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.



  • newborn
    newborn Community member Posts: 832 Pioneering
    Just  a small thing, but it illustrates a lot.  On Pandora's  Aquarium,  lots of people  mention avoiding  dentists, and doctors,  and someone  mentioned she avoids hairdressers.   Several others jumped  in to say "me too".

    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.
    .
    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?
  • newborn
    newborn Community member Posts: 832 Pioneering
    edited June 2019
    Hart86 thanks for reply.  Do you find difficulty  in  other situations where you are obedient and compliant, instead of  standing up for yourself? 

    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.

  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Hi @newborn, this is really interesting.
    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.
    Community Manager
    Scope
  • newborn
    newborn Community member Posts: 832 Pioneering
    I have a new word to offer, and would like to see if others relate to it.

    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. 
  • newborn
    newborn Community member Posts: 832 Pioneering
    Thanks Hart86. Glad it was useful to  you.  I strongly suggest  thousands of folk are being badly abused by the harm inherent in 'treatment '  which  is the exact opposite of what they need.

    It must be equivalent to pumping insulin into a non-diabetic.  



  • rete
    rete Community member Posts: 17 Connected
    Oh wow so so glad you put this post up I have ptsd extrem so I am being told and yes my gp as tryed getting me help but nothing yet I AM in staffirdshire  . But am going to attend a group called wellies in a few weeks it's a place for people with mental health issues so hoping it's somethink to get me out at least do see a counseller  too . Have given up on finding help soully  for ptsd . Has it seems the mental health services  are now not fit for purpose lol . Will just find my own way through it and find my winds to fly .
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    ****triggers mention of rape****
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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. :/ I never had a problem with pelvic exams until ~5 years ago, when I was drugged, taken to someone's flat, and raped multiple times. Can't deal now. The rape triggered my CPTSD bigtime. I was very lucky to get 6 months of free rape crisis counselling, followed by continued counseling for very little money. 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    I have to say, every time I have to go through an round with the DWP for ESA or PIP, my CPTSD gets triggered again.
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Hello @rete, I don't believe we've 'met'? Welcome to the community! 
    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.
    Community Manager
    Scope
  • rete
    rete Community member Posts: 17 Connected
      WARNING TRIGGER   .Arrr thank you yes only found out about wellies project from a friend who used to work on mental health and was involved in setting it up .its their 10th anerversary  so having an open day which I have been invited to . Think there are other such groups in other areas . Though feeling abit anxious about going am determined  to go and face the fear . Will let ya know how it goes . And yes counselling  is going well too though that's for child hood abuse . But covering all things was talking about my inability to pick clothers and feeling unsafe when wearing anythink other than trousers and how that makes me feel. Don't know is any one else has these issues ??? . 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @rete! The wellies project sounds really interesting! I'm glad the counselling is going well for you. I hope you have found it helpful to talk through things with them :)
    Scope

  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @jose2 Just noticed your rheumatologist comment. There *must* be a rheumie at your hospital, as they deal with arthritis, and every area has people with arthritis!!!! GP either uninformed or lying...
  • newborn
    newborn Community member Posts: 832 Pioneering
    Message to  anybody who has endured things done to them.   You are not the ones who are mentally faulty,.   The people who did those cruel things to you are the ones who are mentally sick and need mental treatment to correct their faulty thinking and behaviour. 

    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. 


  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    A very interesting observation @newborn, thank you.
    Community Manager
    Scope
  • newborn
    newborn Community member Posts: 832 Pioneering
    P.S. There is the start of a kick back  against the term Disorder.  Soldiers trained their own  responses to  make  sure they didn't waste time thinking things out, just automatically hurled themselves flat instantly at the sound of a gun. That kept them alive,  so it wasn't a Disorder.   

    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.


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