Just can't find anyone to help

[tracyclements]

I live in an affluent, educated town in a prosperous area of one of the most advanced Countries in the world and yet the only service available to me, referred by my GP, is something called 'Healthy Minds'.  Even the name is rather patronising and suggests that this is something easily achieved.  Of course, for some conditions, counselling and talking therapy are wonderful and provide an invaluable service and support, but Complex Post Traumatic Stress is unfortunately, as its name suggests, complex and needs to be placed in the hands of someone who understands it and knows, at the very least, how not to make it worse.

At Healthy Minds I met a lovely lady who gave me lots of tick box forms to fill in about my levels of anxiety.  She explained that she was a cognitive behaviour therapist.  I was shocked and upset because I had explained to the GP, who had received my psychiatric assessment notes, that I needed a specialist in CPTSD and that all research into this disorder, showed that simple single approach treatments such as CBT would at best scratch the surface, and would probably cause more harm by shining a light on all of the feelings of inadequacy that years of neglect and abuse had caused, but with no training in trauma therapy or indeed any knowledge at all of CPTSD, such a therapist would not be able to help. (The GP that I had initially seen had filled in a tick box sheet.  I said that none of this was relevant or applicable, but she said I wouldn't get into the system if 'we didn't tick some of the boxes.')

I explained to the CBT counsellor that I needed to see someone with psychology and trauma training and at least an awareness of CPTSD.  She seemed to feel insulted by my rejection of her services.  If she, or the referring GP, had known anything about Complex Post Traumatic Stress Disorder then they would have known that someone like me needs to fully believed and supported because we are waiting for the next hurt or rejection or criticism, and when triggered, our brain and body forces us into an emotional flashback over which we have little control and within which we can become trapped for hours or days or longer.  Emotional flashbacks which have no visual component are one of differences that CPTSD displays rather than visual flashbacks which are known to be part of PTSD. 

The lady at Healthy Minds conceded that my case was complex and that she would speak to the psychiatry team about the best cause of treatment for me.  Finally, I thought that I might find a specialist who could understand me and start to help me.  Eventually I received a letter from Healthy Minds telling me that I had been referred to MIND for a short 10 week course of Interpersonal Therapy.  Even writing this is making me shake and cry; there really isn't anyone willing or able to help or to even believe me!

I telephoned them and the lady I had seen was there but apparently preferred to get her supervisor to discuss the decision with me.  He did not cal,l so I called again and suggested I wanted to make a complaint.  The supervisor did then call but explained that he knew nothing about me or my case.  I explained everything I knew about CPTSD.  I needed to refer to some of the books and clinical studies because I needed backup.  He told me that I seemed rather fixated on what I had read and that he needed symptoms.  If he had known anything about CPTSD, he would have known that this comment alone has been enough to hurl me into an emotional flashback where I am the bullied boff at school who is using books to try and escape.

Over the phone this complete stranger wanted a list of my symptoms.  To do what? To see if I am genuine?  I have spent 50 years showing the world a confident and competent person.  Is it likely that I will break these barriers now and reveal all to the man from Healthy Minds?  He asked what my single incident trigger had been.  That is PTSD.  I don't have PTSD and it would probably be insulting to someone with PTSD to suggest that I could have.  Since I really had nothing to lose now because it was clear there was no suggestion of appropriate help or support, I thought I might be brave and actually stand up to someone.  I told him that I was offended by his questions and the suggestion that a 10 week chat with a counsellor would cure me.  He asked what made me think that I had PTSD.  He said that 'if' I did have it then maybe they could rethink the treatment.  As I was walking through town with my daughter I didn't tell him why I thought I did not have PTSD, and why I did know that I have been suffering with CPTSD all my life.

I could have listed my adoption by dysfunctional abusive parents and the years of abusive.  I could have discussed them abandoning me and the rape that I have always blamed myself for.  I could have continued with details about my years in a physically and mentally abusive relationship.  I could then have gone on to tell him all about finding my biological family and the hurt and rejection which again, I blame myself for, since I went looking for them.  I could have listed off all the bullies and narcissists that I have been attracted to and rejected by.  I could have told him that I struggle to leave the house because the fear of hurt and rejection has become so overwhelming, that I cry and shake at the slightest thing and really find it difficult to see why I am here at all.
But, I didn't.

I suppose that this has reaffirmed my belief that the only person who can really 'save' me is me.  All of the research from Attachment Theory to current guidelines on CPTSD suggests that someone like me will always be looking for that acceptance that they never had, always waiting to be liked and saved, to be good enough, and when they are not, when they are questioned and doubted, and their feelings belittled, they will retreat and blame themselves some more.

[Roe Lee]

Hi tracyclements,

First off, i want to give you a big welcoming hug to the forum

I think it's safe to say that you'll find quite a few people have been disappointed by the mental healthcare service that they're presented. I think the key here is to not lose hope. I had a brilliant counsellor who couldn't help me more because the *COUGH* national healthcare service *ahem* has "systems" and she admittedly was not equipped with specialist skills to officially diagnose and help me. She did put me at the near front of the waiting list, though, because of the nature of my trauma she felt i needed immediate attention. I'm sorry it didn't work out for me, and i'm sorry it didn't work out for you. I wish everyone could have instantaneous good care given to them. But mental health is a big grey splodge and we have to keep trying again if something doesn't quite work out.

But i'm glad you've found your way to this forum, i think you'll find that people here are warm and welcoming, non-judgmental, and that they are very informed on cptsd. I've found a mini-home here, where i can keep updated with the goings on of cptsd and the sense of community here gives me something i never had - hope.

Traumatic events take away our power, our bravery, our sense of self love, but finding a good community among like-minded people can give us the hope and support we need to keep getting back on that horse.
In a sense, you're right. You are the only one who can save you. You have the power to keep searching for a professional suited to your needs. You have the right to choose who you see. You have the honesty to admit that you need help, and You have the strength to go searching for it. because You deserve it. You deserve help, as we all do. It definitely won't happen overnight, but hopefully having a community will rekindle your strength to try again? Hope and community are very good catalysts for good things to come.

All my love,
Roe.

[Kizzie]

Hi TC and welcome to OOTS     

I shortened your post as it was quite long which makes it difficult for members to get through. It's still overly long but we understand that new members may have a lot to say in their intro post. I will PM you your full post  though so that you have the content I took out and perhaps post it as a second and third post elsewhere on the board.  You are more likely to get responses if your posts are shorter      In general, we encourage members to aim for 2 -3 shorter paragraphs that focus on one issue at a time. If you do want to make longer posts because you need to write in more depth about something, we recommend starting a journal as we don't normally restrict length in that section.   

Unfortunately, Complex PTSD is not overly well known just yet and is often confused with PTSD.  That's part of the mission of OOTS - to raise awareness wherever and whenever we can. You pushing back is part of what will help in this effort although I know it's discouraging not to have found anyone yet to help.  I live in a small rural village with the nearest large city four hours away so I have had a similar problem as have many of us.  I'd love to see more distance trauma focused therapy become available much more accessible and affordable. 

We do have a section with various databases to help search for therapists (http://www.outofthestorm.website/treatment/), and a resources page with some helpful forms and information sheets (http://www.outofthestorm.website/downloads/) if you haven't seen them yet. 

[Kizzie]

Roe Lee - I also shortened your post because it too was very long.  If you would like a copy of your full post plse let me know. 

As per our Guideline Reminder this week in the Announcements section, we are going to edit/remove more overly long posts because of the increasing number lately.

[Bluevermonter]

Welcome tracyclements.

I once did an informal poll of all the counselor people I knew. Out of 6, not one had even heard of CPTSD. My psychologist friend knows all about it.

It makes me really mad that my ex, who had CPTSD, could never find the help she wanted.

OOTS is an excellent place to share and listen. You may indeed be the only person who can help yourself, but I think you will get some pretty good support and knowledge here.

p.s. I love the irony in your post. And eff on bureaucrats!