Trying to find therapy

[Cuthberta]

in 1997 my GP diagnosed me with depression, & suggested I find a counsellor. I asked my Vicar. He said he was a trained counsellor, and would help me.

Five months later; he had changed to using me as his counsellor, telling me about his own family's abuse issues. Then he decided to move away, and avoided having a closing session. When I kept asking for this final session he told his wife, the bishop, the curate and anyone else who would listen that I was in love with him and had an unnatural obsession with him. I went to see the bishop because the vicar claimed to be a trained counsellor and had not behaved professionally. The bishop told me that women often have problems letting go of vicars. I felt very dirty.

My GP found me two ladies to offer counselling. They offered what they called a systems approach and taped the sessions. The systems approach meant that whenever I said anything about my family they then told me to look at it from the pov of the other family members. This caused a very rapid decline in my mh, and I told them what was happening to me, but they insisted on carrying on. So I pretended to be better; I was cheery and positive for 4 or 5 weeks until they agreed the sessions could stop. In the final session I told them what they had done, and asked them to listen to the tapes for certain things they had said; they said they did not have them any more. Convenient.

Then I went private. I paid a psychologist at a very well known hospital, and I saw him several times over some months; he did not notice signs of abuse. (He asked what my dad was like; I said a bully. He asked what my mum was like: I said selfish. Then he said, what was your childhood like; I said, 'Normal.' So he thought my childhood was normal.) So he agreed it was depression, and he referred me to a woman psychologist who told me to write down negative thoughts during the week, so that she could help me turn them into positive statements at the sessions. I tried to monitor my thinking, but it is very positive and upbeat; there were no negative thoughts. She did not believe me when I said that, and had nothing else to offer. So I said, 'I have a negative thought for you; this is not doing me any good at all.' I didn't go back.

The psychologist gave me another number to call. I rang that number and left a message and the psychologist rang me back and was very angry with me; he said he had no time in his diary and it was not appropriate for me to try to call him to arrange to see him. I apologised, but wondered why he thought this was my fault. I emailed the psychologist, and said this had been immensely upsetting and I would not try again.

I saw an article about that private hospital some time later. It said that 85% of their patients were diagnosed with depression; I thought, yes, that makes sense. That is all that they look for.

Then my GP suggested a different counsellor, at a local health clinic. This person was the best counsellor I have ever had. He listened to me, and he affirmed that I was not insane, and that I had a lot to deal with in my life and was doing the best I could in very difficult circumstances. He said I was not mad, even though I felt I was. There were only 12 sessions allowed, and then that stopped. He offered to see my privately afterwards, and I agreed, but he did not have an office. He came to my house and that did not feel good, so I did not arrange another appointment. If he had had an office I would have seen him some more, but it didn't feel right.

What next? I read an article about CPTSD and everything seemed to suddenly make sense. I took it to my GP, and I was told to stop aiming for the top of the mountain and to settle for living in the foothills. I emailed the UK trauma group, and one person replied to say there was medical research into PTSD; if I took part I could get a diagnosis. So I emailed the MRC and volunteered. I went along to the sessions, was diagnosed as having PTSD and took part in 3 experimental sessions. They were like * on earth, but I managed, somehow. It was to check whether people with PTSD can control their emotional responses; in effect switch them off. The dr found that yes, I could do this. He wrote a letter to my GP confirming the diagnosis, and recommending a proper evaluation.

My GP sent me to another hospital for evaluation. Then I changed GP surgery.

Within minutes the Dr at the hospital told me I had CPTSD. This was in about 2000; by then I had been unwell for 3 years. The Dr referred me for 15 sessions of what he called 'gentle counselling.' It was neither. It was - well, I don't really know what it was. 15 sessions of an angry man staring at me in silence, with his arms crossed. At the end of that time he told me I lived in the wrong place for more help, and that I had to go back to my GP.

My GP referred me to the local hospital. The same place my husband had been an inpatient 3 times, and I knew how terrible they could be.

The first doctor I saw was truly lovely; really the best ever psychiatrist. He told me I was too traumatised by what happened with angry man to have any further treatment for a while, and he asked to see me every week for some months. Then one day he disappeared; I turned up one day and he had just gone; I was told, 'Didn't he say he was leaving?' They didn't know what to do with me, so I was sent for art therapy.

I met the woman offering the therapy in a very small room. In the corner of the room was a sandpit with plastic dinosaurs in it. I told her that my hobby is painting; if art could heal me it would have already done so. We talked, but there was no connection. She had no awareness at all of PTSD or CPTSD, and nothing to offer.

Next I was offered group therapy in the next town. I met the man who ran this, and after we talked he agreed with me that group therapy was wrong for me; I was far too unwell to cope with it. And I said I could not be in a group with alcoholics (my h was an alcoholic) and he agreed with that.

Then I was sent for counselling with a lady in the local disability center. She was not a trauma specialist; she was trained in complex needs. I didn't know what that meant. I saw her for about a year, but there was nothing specific to trauma at all. I don't really know what the sessions achieved. At the start she promised not to leave suddenly as others had, but to make sure I would be handed to someone else before going. Then after a year she said she was leaving. She did not arrange any handover; she wrote to my GP and suggested I be referred to a specialist group she named.

It took me 3 or 4 years to achieve getting to that specialist group; I knew nothing about it at all, only that she said it was the right place. It was out of area, so lots of breaks were put on funding, or referral, and it took forever. But I persisted and got there for an assessment.

I asked if they had trauma specialists. They said no; no trauma specialists. I asked who would prescribe for me, because my expectation was that therapy for trauma would be combined with support from antidepressants. They told me that everyone on their programme had to be totally alcohol and drug free. That rang a huge warning bell; I asked for their literature. It said that their clients were ex offenders, alcoholics and anti social people. I was none of these, and I certainly could not attend groups with such people. I could see me lasting less than 6 weeks with such company, and was very afraid. I asked if they could refer me to a trauma specialist instead and they said no; they had no such people on their team. At that point I found out that 'complex needs' is code for 'personality disordered.' I have never been diagnosed as having any personality disorder; better than that; I have been told that I do not have any such.

So after spending all those years trying to get to that place, I declined to take it up.

I think you can see why I am seen as problematic.

I tried again; I asked to be referred to a trauma specialist. By then my local hospital had had enough. The psychologists decided to disagree with the former diagnosis of CPTSD; they told me that in their view it was not correct. They could not tell me what the problem actually was, only that it wasn't that. They were not going to refer me anywhere. By then I had stopped taking anti depressants because I was concerned about taking them for years and years without therapy. I thought they were just to keep me quiet.

I complained to the trust and asked for a second opinion. It took another 4 years or so - maybe longer - to get that second opinion. I was referred to a London hospital for an assessment.

In the first session the Dr confirmed CPTSD and also told me I am dissociative, and have very distinct alters. She could see it immediately. It was a huge shock, but it also made sense; lots of things that I had never understood suddenly came together. She saw me many times, and wrote a very thorough report for my GP. She wanted to offer me treatment, but the hospital had funding cuts to make, and one of those cuts was her whole department. It was all closed. Gone. By now we are up to about 2012.

I went back to my GP, and asked him to refer me somewhere else; to a specialist trauma or dissociative centre. He said he had no idea where to refer me, and he told me to find somewhere that had the right provision for me, and to let him know. I emailed 2 places. One of them replied and said they had no places. The other did not reply. This was making me unwell; I couldn't do it. I went back to see a different GP; I said I couldn't do this. She just shrugged her shoulders.

2 years later I found a place that might do, and wrote to my GP to say, can you refer me here? I said, I am very unwell. He replied to say come and see me.

I did not go to see him. I am not well enough. I have not heard anything further.

I don't go to see drs any more. They make me unwell.

[Trees]

Cuthberta, your long tale of seeking help speaks to your perseverance and to your pain.

I have a long history of this also.  I mostly find it too dreadful to talk about.  But here and there through the decades of struggling to find help there has been an occasionally bright light of real knowledge and understanding.  A doctor or therapist has really been able to understand me, to speak to me, to hear me. 

You persevering until you found that doctor in the London hospital sounds like almost a miracle!  What a blessing that you were able to accomplish that!
("I complained to the trust and asked for a second opinion. It took another 4 years or so - maybe longer - to get that second opinion. I was referred to a London hospital for an assessment. . . .In the first session the Dr confirmed CPTSD and also told me I am dissociative, and have very distinct alters. She could see it immediately. It was a huge shock, but it also made sense; lots of things that I had never understood suddenly came together. She saw me many times, and wrote a very thorough report for my GP.")

I hope you are able to accomplish such a connection again, somehow.  Clearly you learned a lot from this doctor, and you seem to have used this as a springboard for reaching out for additional information from elsewhere.

I feel like I just have to keep cobbling together the occasional good experience with a professional along with whatever I can glean from books and different kinds of internet sites.  And right now I am lucky enough to have a phone therapist who is really knowledgeable about people like me.  I found him on the internet.

Wishing you all the best in your search.   

[Cuthberta]

Cuthberta, your long tale of seeking help speaks to your perseverance and to your pain.

I have a long history of this also.  I mostly find it too dreadful to talk about.  But here and there through the decades of struggling to find help there has been an occasionally bright light of real knowledge and understanding.  A doctor or therapist has really been able to understand me, to speak to me, to hear me. 

You persevering until you found that doctor in the London hospital sounds like almost a miracle!  What a blessing that you were able to accomplish that!
("I complained to the trust and asked for a second opinion. It took another 4 years or so - maybe longer - to get that second opinion. I was referred to a London hospital for an assessment. . . .In the first session the Dr confirmed CPTSD and also told me I am dissociative, and have very distinct alters. She could see it immediately. It was a huge shock, but it also made sense; lots of things that I had never understood suddenly came together. She saw me many times, and wrote a very thorough report for my GP.")

I hope you are able to accomplish such a connection again, somehow.  Clearly you learned a lot from this doctor, and you seem to have used this as a springboard for reaching out for additional information from elsewhere.

I feel like I just have to keep cobbling together the occasional good experience with a professional along with whatever I can glean from books and different kinds of internet sites.  And right now I am lucky enough to have a phone therapist who is really knowledgeable about people like me.  I found him on the internet.

Wishing you all the best in your search.   

Thank you;you are very kind. I am glad you have some help, but I think you are right in searching for yourself; that is always the most effective way forward for me.

I am relieved that you don't blame me for all of that never quite working out; I did my best but with a few shining exceptions as you say, the responses are very often to offer what happens to be around, rather than what I need. Rather like a kidney patient who needs dialysis being offered a stent in their heart instead, because there is no dialysis in the area and nobody will pay for out of area treatment. Somehow in mental health that is regarded as a viable option; Lord knows why.

I feel as if I am between attempts to find help at present. I may be stronger again one day, but certainly not now. It feels as if the NHS is just waiting for me to get to old or die; they don't really care which as long as I cost nothing. At present quite literally nothing; I never go to the doctor, I have no medication and if I feel anxious I take Kalms. It is too challenging to negotiate receptionists, appointments and drs to get anything else.

The really worrying part of it for me is that this all replicates the neglect from my family. I worry in case I am somehow causing it by being here. But that way madness lies so I try not to think about it.

I look after my daughter, I paint pictures and dream of going professional with them at some point, and I try to be happy with what I have. It could be a lot worse.

[Trees]

I am relieved that you don't blame me for all of that never quite working out;

You don't deserve any blame at all for any of these difficulties!!  You deserve applause!     You deserve hugs!   You are doing an amazing job dealing with an incredibly challenging condition.

I did my best but with a few shining exceptions as you say, the responses are very often to offer what happens to be around, rather than what I need. Rather like a kidney patient who needs dialysis being offered a stent in their heart instead, because there is no dialysis in the area and nobody will pay for out of area treatment. Somehow in mental health that is regarded as a viable option; Lord knows why.

You are so right about this, your example is just perfect.  The ignorance out there about our conditions is just crazy-making.  It's like trying to walk through a mine field sometimes.

The really worrying part of it for me is that this all replicates the neglect from my family. I worry in case I am somehow causing it by being here. But that way madness lies so I try not to think about it.

I look after my daughter, I paint pictures and dream of going professional with them at some point, and I try to be happy with what I have. It could be a lot worse.

You deserve love and respect and safety and comfort.  It sounds to me that you are making heroic journey toward these things.

(One of my own self-soothing mottoes is "It could be so much worse."  And then I go hug my dogs and my trees.)

[Cuthberta]

Thank you so much. 

I sometimes think I should write a book; 20 years of trying to get treatment from the NHS. I am not sure anyone would believe it.

Or another, about what caused me to become ill in the first place,and then what has kept me that way.

On the other hand, gardening and painting are far better for me; I will stick to them for now.

[KayFly]

Cuthberta,

I cannot believe everything you went through and your perseverance!  It actually makes me feel lucky I have the EMDR Specialist I have now, but it's not cheap, and I couldn't afford it on my own.

I've also felt invalidated, and unsafe in one on one, and group therapy sessions, found myself in the wrong places, under the wrong guidance, but Jesus, I am in disbelief at all you went through.

I am also glad you found the doctor in London so that you could find validation and move forward with your own research.  The research I have done on my own has been particularly helpful, though I am grateful for what "in person" help I have found.

I just want to say, like you, I think about sometimes writing a book or feature film about my life (and I get way in over my head about it...or my critic...WHY AM I NOT WRITING THE BOOK NOW? WHY IS IT NOT ALREADY PUBLISHED? HAHA)...

I commend you for recognizing what is good for you now. I like painting too But writing and performing are my crafts, and like you, I will stick with that for now...

But I swear, if you ever wrote a book, I would read it for sure...

Keep on keepin on.  I think you are brave and strong.

[Cuthberta]

Cuthberta,

I cannot believe everything you went through and your perseverance!  It actually makes me feel lucky I have the EMDR Specialist I have now, but it's not cheap, and I couldn't afford it on my own.

I've also felt invalidated, and unsafe in one on one, and group therapy sessions, found myself in the wrong places, under the wrong guidance, but Jesus, I am in disbelief at all you went through.

Me too! But the perseverance has disappeared now; it was rather like banging my head on a brick wall.

I am also glad you found the doctor in London so that you could find validation and move forward with your own research.  The research I have done on my own has been particularly helpful, though I am grateful for what "in person" help I have found.

I just want to say, like you, I think about sometimes writing a book or feature film about my life (and I get way in over my head about it...or my critic...WHY AM I NOT WRITING THE BOOK NOW? WHY IS IT NOT ALREADY PUBLISHED? HAHA)...

I commend you for recognizing what is good for you now. I like painting too But writing and performing are my crafts, and like you, I will stick with that for now...

But I swear, if you ever wrote a book, I would read it for sure...

Keep on keepin on.  I think you are brave and strong.

Thank you; you are very kind.

In parallel to all that lot were  other situations; my husband dying gradually of alcoholism, my daughter growing up into the most superb young woman, problems with church including an abusive vicar who the church refuses to apologise to me for; all sorts of different situations, each one of which could be a book in itself. And I have gradually built up a collection of paintings in boxes in my kitchen cupboard which one day I may find a way to sell; who knows?

In the end we just learn to get up, do what we have to do, and not worry about what can't be done. And of course, never compare with other people, all of whom seem to have so much more. That is never good to dwell on.

[arpy1]

omg! i was just about to start a thread about trying to find cptsd trained therapists in the UK. 

ok. i kind of figured that i was looking for pie in the sky.

but Cuthberta, your story... well, i just don't know what to say.   it reminds me of a wonderfully evocative line i read somewhere: 'i sat appalled'. that's what i did when i read you story.

i have years of  experience of interacting with the NHS, advocating for my disabled husband to try and get appropriate treatment for his physical ailments and i am well versed in the 'we can't treat your kidney disease; we can only offer you a heart stent' scenario!

since i had my huge crash'n'burn last autumn i have done a lot of research on my own and self-diagnosed on the basis of the 'best fit'. even tho my GP is brilliant, he admits quite freely that there is little hope of getting a diagnosis, let alone any appropriate treatment on the NHS for cptsd. even if i wanted a diagnosis on my records.

and he also, after hearing about my research, admits that there probably isn't any real help out there in the private sector (academic now as i have run out of money for it anyway, having spent it all on the useless T i just 'sacked'.    add into the mix my years of trauma in a cult and well... it's not looking good for finding someone with the kind of experience needed, is it?

so there is a sick feeling in my gut, fear of the future, despair is looming.  but, i remember what i was going to post about...

it was to ask questions like:

if i can't realistically expect to be able to access appropriate therapy, what else can i do to help myself? and what about a not quite appropriate therapy that might be helpful anyway?

what strategies/good-enough therapies have other people found worked for them?

has anyone here ever done any dialectical behaviour therapy and if so was it useful?  and is it possible to do-it-yourself?

how do you teach yourself the skills you need to be able to do relationships in a healthy way?  and so forth...

because i just cannot accept that there is no help and that i will always be this way. i cannot accept that i can't find solutions for myself. there must be something i can do to get better? even if there is nothing out there that i can afford to buy, i must be able to do it for myself?

any ideas, thoughts, experiences, victories, anyone?