I am a survivor of extremely severe ritualistic childhood abuse and sadistic systematic torture. Without God's intervention in my life I wouldn't be here - NOW is the time for me to tell MY story by speaking the TRUTH about MY life. I will be silenced no more! On this blog I share MY life, MY healing journey; helpful quotes/stuff I come across and MY thoughts along the way. The more I speak out the more liberated I am from the shame and trauma of the abuse. My broken wings are gradually being restored. This blog has helped me begin to get my voice back and documents the journey God is taking me on to heal me from the trauma and damage caused by that most appalling abuse.

Thursday, 22 December 2016

SEXUAL ABUSE GROUP THERAPY

It's really nice to have something positive to write about for a change.

After nearly 9-years on the waiting list I have been offered a place in the group therapy which begins in January and will run for 12-weeks to the end of March.

Yay!!!

It feels great to finally be at the brink of doing this therapy, which I have been working towards during the last 5-years of one-to-one work.

This group work is the next logical step in my healing journey. It will be a new phase in my recovery process.

I also know it is going to be hard. I know I don't think I can ever be fully prepared for how hard this therapy may turn out to be. It is a massive step for me to take!

But for now, I'm just thrilled to have accepted the place offered to me and to know that it is going to happen now!!

Scary!!!!
Exciting!!! 
Daunting!!!

RELATIONSHIP ENDED WITH TRAUMA THERAPIST

I ended my relationship with my trauma therapist on 16th November 2016. I had the help and support of my mental health Care Co-Ordinator and her manager. This was after months of damaging comments, atmospheres, arguments, manipulation and lack of focus which had me walking on egg-shells around her. I got to the point where I did not want to turn up to sessions and dreaded our sessions. The relationship had become toxic, damaging, and abusive. There was real damage being done to me, to my therapy experience and to my mental health. And it had to end. 

The many questions evoked for me were along the lines of -- how is it going to be possible for me to end the relationship? Can I end it? Am I just going to have to tolerate it until a more natural ending presents itself? Or do I just walk away? What do I do? How do I do whatever I decide to do? Can I do anything? Will I be believed? All those questions and many more went through my mind.

When I asked myself early in November why I was tolerating a relationship which was actually hurting me and making me feel bad - my answer was "because I have to". My response to that was err no!!!!! I don't know have to! I'm trying to do things differently and get out of patterns from the past. 

Shortly after that I reached breaking point and just could not do it any more so decided the only right course of action was to end the relationship as quickly as possible.

The trouble was I didn't think I would be believed when I found the courage to tell my care co-ordinator what had been going on. That showed me how abusive the relationship had become. 

My Care Co-Ordinator was horrified by my revelations. She fully believed me and was totally supportive. She gave me all my available options and left it to me to decide what I wanted her to do next as well as what I wanted to do.

It was really hard walking in to that final meeting with my now ex-trauma therapist. She was extremely evasive, manipulative, defensive and argumentative. I was very glad that I had my Care Co-Ordinator to witness it and to safeguard me.

She pretended it was all a big surprise to her, that there was nothing wrong, that I had never intimated to her that I wanted to end the relationship, that I had misled her. 

When I challenged her she eventually stopped the arguing and lying and admitted that I was speaking the truth. 

She also admitted that she had been holding a grudge against me for an entire year. I knew that but had telling myself for months that a therapist of her standing could not be holding a grudge against me and I must be imagining it. But I had, in fact, been absolutely spot on!

What was even more shocking how she admitted it, she lounged casually in her chair and said... 
"oh yes, I've been holding that against you". 

There was no sense of regret in her manner. There was no recognition that it had been wrong for her as a therapist to do that, and for an entire year. There was also no awareness from her that there would be consequences for such an admission. She was as casual and careless as you like. 

For a moment I was silent in total disbelief of what I had just witnessed!

Unbelievable! Staggeringly and shatteringly unbelievable!! 

I still cannot believe that. I am finding it very hard to get past that. Deeply shocking does not get anywhere near it!

She actually used that grudge against me 2-weeks earlier when I informed her that I was thinking of ending the relationship and attempted to blackmail me in to taking a different course of action.

That final meeting was utterly awful, it was like pulling teeth. But I stuck to my guns. I refused to let her get away with her lies. I refused to be manipulated or persuaded by her to not end the relationship. 

I gave her a letter to read there in the meeting stating my reasons for ending the relationship very clearly with no ambiguity or room for interpretation.

Her response to it was shocking. We both watched her read the letter to the end very very slowly. Then even more excruciatingly slowly she folded the letter up. It was obvious that she was deciding how she was going to respond as she did that. And her response?
"I don't understand!!"

Which was met by a totally shocked silence for a few moments.
"I don't understand" is always her response, it is her "go to" default response to things she doesn't like and is how she manipulates and creates confusion and arguments.

I was not to be drawn in to any of that and kept bringing her back to the fact that I was ending the relationship and I was not going to change my mind.

After nearly 15 minutes of arguing I decided I'd had enough, got up to go and told her I was leaving. At that point she pulled out her masterstroke. She turned on the tears are said... 

"but there's all the things I can't tell you about what's been happening to me."

Erm so!! 

I was halfway out the door at that point and turned back a moment and said...
"and that is the problem and is why I have to leave"

It was staggering that as I was walking out the door her focus was not on me, her client of 5-years walking out the door to never walk back in again -- but upon herself and her personal difficulties. 

I had known for months that personal stuff was going on because she brought it into every session with her lack of focus and inattention. And again I was spot on! 

But for a therapist to act like that, it was deeply shocking. I have no words!!!

All that happened in that room confirmed to me how totally right it was for me to end the relationship and to do it there and then and to do it the way I did with a witness and support.

However, emotionally the impact on me has been enormous. I've had to deal with feelings of guilt, of having been horrible to my therapist, of having "ratted" on someone. Even though the facts show I wasn't. 

All the stuff about being a bad person have been triggered too. 

I seriously self-harmed a week later after I received a letter from my ex-therapist acknowledging the ending of the relationship but pretending nothing had been wrong and she could not understand why I would not want to continue working with her. 

My Care Co-Ordinator was absolutely furious - not only at the content of the letter but also at the fact that she had bypassed all due processes and sent it direct to my home address instead of through the proper mental health channels. I believe disciplinary action was taken over that, but the outcome of course is unknown to me. What I have been told is that several other clients have had similar experiences with that therapist and that I have helped them by doing what I did.

I was re-assessed by the Psychiatrist following that episode of self-harm and changes have been made to my medication as a result.

I am the only person who thinks I am a bad person. I am the only person who think I did a bad thing. 

Mentally, yep I get it, but emotionally, it's a different matter.

And I was heard, believed and supported in the process and since. As I am the only one who thinks I did anything wrong, it proves me to that I did nothing wrong. And somewhere deep down, I know that is right.

It was all really hard. Much harder that I can find words for.

But the main thing is I don't miss her!

I miss the atmospheres and the fear I felt every time I had to see her. I am very relieved I never have to see her again. But, no, I don't miss her, and that tells me all I really need to know!

But if there's one thing I have learned it is that my gut intuition is always right and I can totally trust it.


Thursday, 17 November 2016

NEW CARE CO-ORDINATOR

I've been working with my new Mental Health Care Co-Ordinator since 30th September. She is a social worker and she is phenomenal. She is really professional and very good at her job. She's an absolute gem to work with. I've been really surprised and impressed by her and by the relative ease with which we've been able to build a relationship. The rapport we have is incredible. It's turning in to a very positive and healing experience for me. And it feels like a real privilege to have the opportunity to work with such a good worker during the prolonged absence of my assigned worker. It's really good to have something positive to blog about!! Especially when it involves local mental health team services!!

Wednesday, 21 September 2016

Care Co-Ordinators

My mental health care co-ordinator is off sick at the moment. I have not been seen by anyone at my local mental health facility since early July. 

There were supposed to be 2 workers who I could contact by phone if my worker went off sick. So more than a month ago I requested a phone call and was informed that I was not allowed one because patients were being allocated temporary workers. It had taken me so long to find the courage to use the emergency phone call to be told it was no longer available to me pulled the rug out from under me.

Instead I've had emergency phone calls with duty workers but no allocated temporary worker until last week when I got voicemail message followed up by a letter introducing me to my new temporary worker.

Today I was due to meet my new temporary stand-in care co-ordinator for the first time. In fact I should have been meeting with her right now. 

Instead, I had a message on my voicemail this morning informing me that she has gone sick.

Oh the irony of it. And the frustration too. And so the lack of support goes on!!

Monday, 5 September 2016

The 4th Anniversary

It was the 4th Anniversary of my father's death last week. And it was hard. It told me that there are issues left behind after an abuser dies which do not get better with time.

I experienced a spike in random nightmares and vivid dreams and disturbed sleep during the fortnight leading up to it. That has only just begun to calm down although my sleep is still massively disturbed.

I also had the memory of an incident when I was 6 resurface during that time. It was a memory I thought I had dealt with, but it came up with a different perspective and different feelings than I've had about it before.

I was 6. The family was on holiday and we were visiting Birmingham. It had been a very long, hot day. We were traipsing around the outdoor market of the old Bull Ring in Birmingham. I recall that I had had enough of wandering round. I was hot, tired and cranky and gave voice to my feelings. 

My father was walking in front of me. He turned around and hit me so hard that I was sent flying through the air and smacked hard into the chest of a stall holder and upturned him and his stall. 

He was understandably very angry, not at me, but at my father, as were a number of bystanders. I remember thinking "oh great, the police are going to be called and he is going to be locked up and it's all going to end.

But my mother being such a charmer in public managed to talk everyone down and convince everyone that they had not seen what they thought they had seen and nothing had happened.

A few things stuck with me about the incident.

First, it was virtually unknown for any abuse to happen in public. Image was everything so a happy, smiling family was what was presented to the outside world regardless of the truth. So for my father to hit me, and to hit me so hard in public was a very rare event - it just did not happen.

Secondly,  it struck me that me, aged 6, was not shocked by his actions, I was used to being on the wrong end of severe violence. So, on one level, nothing out of the usual had happened. It was what I was used to. But for him to hit me and to hit me so hard in public was extraordinary and so I felt it must bring an end to everything. And, of course, it was all my fault. I had made it all happen by my "bad behaviour".

I now recognise my "bad behaviour" as being quite normal behaviour for a cranky 6-year old.

I remember feeling crushed when I realised the police were not going to be called and the crowd slowly melted away as if nothing had happened. 

I remember thinking "no-one is going to rescue me from them, there is no escape and no rescue." I felt very alone and very afraid. 

I remember feeling hurt, confused and disappointed by all those adults who witnessed something appalling but who turned a blind eye and a deaf ear. I remember I was disappointed, deeply disappointed, by those were taken in by my mother's charm, which of course only existed in public. 

I remember how I couldn't believe that no-one held my father to account for his actions that day. Not even the disgruntled stallholder who was not quite so convinced by my mother's silver tongue but was mollified enough to do and say nothing about what had occurred and who just turned and set about putting his stall to rights while I stood there alone, confused, uncertain, wondering what had just happened. I couldn't get my head round it. I still can't get my head round it.

I also remember how I knew that I was in for it, a line had been crossed and I was going to pay dearly for crossing that line and creating that situation! I was shit scared, and with good cause.

I cannot tell you what happened afterwards. It is a total blank. I have no memory of what happened, which tells me the repercussions were horrific. There's always a good reason why there are memory blanks.

So along with the resurgence of that particular event came very conflicted feelings about my father. I've always had conflicted feelings about him which have got worse since he died. Now I understand a little why. 

My father was someone who could be very nice to me, and he was very nice to me sometimes, especially in parts of my early childhood. But he was also someone who could quite literally turn on you. One second being very nice to you, then a split second later being the total opposite.

I often used to hide him behind the fact that many things he did were because my mother ordered him to do them. But as this incident shows, there were times he did terrible things off his own bat, not to please her. His indifference to my feelings and needs, his terrible violence and unpredictability were partially offset by his moments of kindness, which created confusion for me and conflict in my feelings and my memories.

So I still feeling conflicted by how I felt about him then and how I feel about him now. My feelings and my thoughts are conflicted. And I hate him for creating that scenario. And I guess it suited his agenda to do so.

But I am still very glad that he is dead and cannot hurt or abuse anymore.

I am also very glad that he suffered towards the end of his life, although no amount of suffering could ever compensate for the suffering he meted out to me.

I still have to deal with deeply rooted thoughts about how that makes me a bad person. But I know that it does not actually, and that is isn't really about that. It is all about and because of the brute of a human being he was.

Saturday, 4 June 2016

6 YEARS

It is six years since my parents and brother were on bail following my police interviews. What a six years that has been for me and for my life. I am more accepting of myself, how I am and how I deal with the challenges of life alongside living with the consequences of severe abuse every moment of every day. 

I have no regrets about going to the police, though I still feel betrayed and let down by them and the CPS. It may not have turned out the way I hoped - with my still living abusers charged, found guilty and put away for a long time. 

But my life is very different now. 

I am proud that I broke my silence. I am proud about the hard work I've done in therapy during the past four years. 

I am not the same person, and that is all for the better. 

Yes life is still an enormous struggle and it always will be. I often wish I wasn't around having to deal with the pain, abandonment and trauma, every moment of my life. But my self-understanding and self-acceptance is phenomenal which I would never have believed possible. 

The last six months has been one illness after another, the trauma of the PIP process being the main contributing cause.

But I'm still here and I've turned 50, which is another miracle too.

Tuesday, 22 December 2015

MASSAGE

I had my Christmas massage yesterday which we always try to make special.

But this time it was going to be different because my body's all over pain levels have been extremely high for weeks with all the stress I've been going through and I am aware that my whole body feels very tight.

Normally my body relaxes when Caroline gets in to the massage but yesterday it wouldn't or couldn't. 

I was flinching when she tried anything more than just a gentle surface massage, even on my back. So she eventually gave up and just worked on my shoulders and neck instead. 

That is the first time in over 3-years of having massage with Caroline that I've not been able to physically cope with the massage. In her words, "there is so much stress in your body and your tissues that you just didn't have it in you for a proper massage today, physically or emotionally".

But the good thing which came from the massage I only realised later in the day.

I realised that just by having the massage I felt human again. I also realised I've not felt human for a long time. 

Instead I have felt instead like a cog in the wheel of a vast system which is treating everyone who comes in to contact with it in cruel, nasty, inhumane ways without the means to meet even the most basic human needs through no fault of my own. That has felt really awful and been really disempowering!

So I realised that hey, it's good to feel human again. It's good to be able to feel my body, feel my skin, notice my breathing all over again, almost as if I've never felt any of those things about myself before.

It is something I need to hold on to that there is more to me than all the stress and how that stress has impacted my life, my mind, my emotions and my body.

I am alive, I am human, I have feelings and I have needs.

Sunday, 20 December 2015

CHRISTMAS

I am looking forward to going away for Christmas in a couple of days time. I am due to leave during the small hours of Wednesday morning for the long drag over to Dover for the ferry.

I am having a complete change this year. I am not going to the Alps I am going to Belgium. And I am going on a specialist holiday for solo travellers which means my travel is taken care of from door to door. I don't have to worry about expensive taxis.

I will be staying in a hotel near Mons, going in to Brussels on Christmas Eve to explore the Christmas markets, discover the Manneken Pis and enjoy what I believe is amazing architecture. On Christmas Day we have a quiet morning at the hotel then go to Mouscron in the afternoon to visit their Christmas market. On Boxing Day we will be visiting Dinant. Then the following day I imagine we shall visit a Belgian Chocolate factory shop on the way to Calais on the way home.

The weather looks like it will be mild and mostly dry, which makes packing relatively straightforward.

I'm looking forward to speaking French, wearing my Christmas ear-rings, my new santa hat,a new Christmas jumper and to enjoying Christmas, Belgium style!

It's going to be something very different for Christmas for me. And most of all, I'm glad I do not have to face oodles of travelling which going to the Alps entails. It should be a nice gentle time, which is probably just what the Doctor would have ordered for me.

SINCE THE ATOS ASSESSMENT

I was in bed for 5-days following the assessment. I was suicidal, I self-harmed seriously, it was one of those times when self-harm, in this case cutting, was one step back from suicide and kept me alive. I could not get thoughts of death off my mind, they were there constantly.

During the assessment I developed extreme head pain and horrific pain shooting through my right eye, I thought I was going to have a brain haemorrhage, it was so bad. After a few days of this I spoke to the Dr on the phone because none of my medication was touching it. She said she thought it was a severe stress headache and decided to treat it by increasing my Amitryptiline by one dose, Amitryptiline widens your blood vessels and is a preventer, it is also a tricyclic antidepressant which works well alongside my other antidepressant Mirtazapine. It took about 6-days for the full affect to kick in but it did the job. I went from not being able to touch my right eye, from being blinded in my right eye to gradually over a few days I could touch the eye and my sight gradually returned too. One week after changing the dose the headache became to a dull ache and remains a dull ache every day. But I can cope with a dull ache. It also means I can notice when a migraine is starting and treat accordingly.

I've now had that headache for over 6-weeks. I saw the Dr the other day and she has agreed to keep me on this level of medication until the end of January, when hopefully my financial situation will begin to be taken care of and the pressure on me will ease. My physical pain levels have also been appalling since the assessment. The stress has come out in my body in all sorts of ways, but the escalation of my all over physical pain has made everything so much harder. My sleep has massively impacted. I've found it very hard to get off to sleep and I've found it very hard to stay asleep which has compounded the fatigue and exhaustion to almost un-liveable-at levels.

On 15th November I received a letter from East Devon District Council who handle my housing benefit and council tax reduction informing me that my DLA had been stopped and I was now in receipt of PIP standard rate daily living, my mobility had been stripped away completely. I could not believe what I was reading. I could not believe that the DWP could inform the council ahead of informing the claimant, I was absolutely disgusted by that. It was obviously a proforma letter so it is obvious this happens all the time. The speed of that decision made it abundantly clear that the DWP waited for the report for the ATOS assessor, took her report as the basis for their decision and ignored everything else. The DWP also did not ask for further medical evidence from anyone named on my form which makes their decision extremely flawed.

It took the DWP until 25th November to get around to informing me of their decision, their reasoning behind it and what points I had been rewarded for what. It was very triggering reading over and over “you report problems doing ….. but I say you have no difficulty…. [or similar words] and there is no evidence otherwise….” Which was a lie. It was very difficult coping with that kind of thing because it was so reminiscent of how abusers work-- “you say this but I say this is [about you, about what is going on etc] and my version of events is the right one”. What you have to say has no value or influence on me at all, because it is my interpretation which is the only thing which counts.” That is a horrible dynamic which the DWP used over and over in their reasoning and it ripped me apart with trauma.

It was obvious they had no understanding of trauma or of M.E. and had disregarded everything I wrote on my form. They disregarded the supporting evidence too. None of what I read rang true because it which was plainly based upon a flawed report from a bullying ATOS assessor. It was obvious they had totally ignored all the mental health issues I have. It was a total shambles. As for Debbie, well she read it, put it down and said very slowly “what a load of total shite, but at least we have loads about which to take them on. What I read in this report is not the 'Fi' I know, they have not got you at all”.

The loss of two-thirds of my income was instant which was catastrophic for my finances. My income had been dropped by £85 a week - £340 a month - which meant my finances were instantly in free fall. My bus pass went immediately which was a huge blow on top.

The stress, massive financial loss and uncertainty of knowing I may have to face an appeal tribunal at some stage to prove how ill I am, to get the disability benefit which I, and everyone who knows me, would agree I am legally entitled to. The instant timescale of financial loss followed by an indefinite timescale for how long the appeal process may take makes it very hard and is absolutely horrible.

The DWP are very clever at putting very difficult to achieve timescales on claimants but give themselves no timescales at all!

Without family to fall back on, coping with such huge loss brought into stark focus the reality of my vulnerability. I live every day with that knowledge and that vulnerability but don't focus on it because if I did, I would not be able to function at all. So having that brought into such sharp focus has had a massive destructive impact upon my life and my ability to keep going and face each day. This is the longest period of my adult life that I have been constantly suicidal, with thoughts about my death and my funeral there at the front of my mind 24/7. There is a very strong survivor child part within me who has taken over functioning many times during the last 6-weeks or so. She is exhausting to be around but without her I would not still be alive. Without self-harm I would not still be alive. And without any really good coping strategy – distraction – I also would not still be alive. Without the professionals around me and my friends I would not still be here. 

I have been astounded and overwhelmed by the response from everybody – it's been the same, give or take the odd word - “no this is not fair, you don't deserve this, after all you've been through, to have to deal with this kind of stress.” Even my massage therapist said, with tears in her eyes “this is not on, after all you've been through to be treated like this, if you with all your disabilities cannot qualify for PIP then who possibly can?”

I spent the remainder of November and the first half of December preparing a formal letter requesting a Mandatory Reconsideration of the decision – this is the first step of the appeal process. It was incredibly stressful having to reiterate what I had already told the DWP but to make sure I do it in such a way that the information is presented to them in a totally different way. It was also very stressful having to negotiate with the professionals involved in my care to provide supporting documentation evidencing and backing up everything I was saying in my own letter and all within a very tight timescale. The paperwork went off last Wednesday and I know it has arrived safely well before the date given beyond which no appeal could be considered.

I have been comforted by the overwhelming support I have received from everybody, whether that has been emotional support, food boxes or financial contributions to help me cope until I am able to get help to sort out the financial mess this has put me in. And somehow it has given me the strength to keep going.

It has also been comforting to know this is happening to people all over the country. As I was preparing my Mandatory Reconsideration – C.A.B released figures showing they have in the region of 300,000 cases nationwide concerning PIP. They are absolutely swamped by the volume of people needing help with perverse PIP decisions. The C.A.B.'s position is that the DWP are not getting it right at initial assessment stage, they are not getting their decisions right, probably because they are relying on ATOS assessors rather than information from claimants, GP's, surgeons, mental health workers, physios and so on.

My G.P. told me that they are dealing with this every day, that they are fed up with the DWP ignoring their evidence or not even asking for it in the first place.

I have been referred to an organisation for help with my finances and then once that situation has been stabilised, more general budgeting and financial advice. I was referred to them in November with the request that I be seen in 1-2 weeks maximum. Unfortunately, they, just like the C.A.B. are overwhelmed with referrals and requests for help. However, I was informed a couple of days ago that I do now have a named worker, so it looks as though early in January that support is likely to kick in.

I don't expect to hear anything from the DWP until the middle of January. I am hoping common sense will prevail and my Mandatory Reconsideration will be allowed. I do not want to have to face what could be a long drawn out damaging appeal process and I should not have to face that. But the DWP are a rogue department with no accountability for their actions so I will just have to wait and see, hope and pray and keep my fingers and toes crossed that they will realise the errors in their original decision and do the right thing!

In the meantime I am absolutely exhausted, mentally, emotionally and physically. I am totally drained. I have nothing left. The last couple of months have taken me to the brink and over a few times. And still my body does not want to rest. It is obviously going to take a while for those stress hormones in my system to calm down, hopefully my holiday over Christmas will help that process.

MY BRUSH WITH AN ATOS ASSESSOR

It is very hard to find words for what's taken over my life since I last posted. I've had immense trauma coping with the brutal, inhumane degrading system of reassessment for disability benefits the government does not want you to have. The sheer nastiness of the way it is carried out has been awful, especially with my history of major trauma. The uncertainty and fear created severely affected my physical and mental health making me extremely ill.

PIP is the most badly named disability benefit possibly, it stands for Personal Independence Payment. But the way it is being administered is actually taking away the independence of severely disabled people all over the UK. The government's stated objective for bringing PIP was to “safe money by forcing “20-25% of disabled people off disability benefit”, while stating at the same time that “genuinely sick and disabled people had nothing to fear.” That was a total lie. And the way they made it so hard for disabled people to qualify – by making the criteria extremely hard to qualify for. The whole reason for it's existence is totally obscene.

During the 2-years which led up to my PIP process beginning I heard and read what has been happening as it has rolled out across the country. I've read all the horror stories of people being left destitute despite being severely disabled, many terminally ill, others losing their mobility cars despite needing them and being legally entitled to the benefit. I knew the ATOS assessments were being fixed against claimants, with assessors writing down lies and often writing something totally different to what the claimant actually said. I knew that people were having their disability benefits taken away from them and being forced to appeal in a process which was taking months and often a couple of years to resolve.

I just kept hoping I might have a kinder experience of it. However, that was not to be!

My experience of PIP began in February when I received a letter telling me that DLA had been abolished and I would be invited to apply for PIP. I got a letter in July telling me my DLA was ending and I would be getting a PIP form which arrived during August with an absolutely ridiculous and impossible to meet deadline for getting it back to them. My mental health Care Co-Ordinator managed to negotiate a 2-week extension to the deadline. The whole of the next 3-weeks was taken over by the 40-page form which I filled out giving maximum information and additional information that there was nowhere on the form for. I returned the form with loads of robust supporting evidence to try to make it as hard possible for them to refuse my claim.

At the end of September I received a letter requiring me to go to an ATOS face-to-face assessment with less than a week's notice which was totally impossible to do. Again my Care Co-Ordinator managed to negotiate with the DWP to give me a new date with a proper amount of notice. Debbie also negotiated where the assessment was to take place because it is impossible for me to travel to their centre in Exeter. We both wanted it to take place at St. John's Court, my Care Co-Ordinator has attended previous ATOS assessments with clients at St. John's Court. However, they were adamant that it take place at their centre or in my own home and they were very nasty and bullying in how they stated it.

So I was left with no option but to have it in my own home, which I didn't really want and which was disempowering.

My home is my safe space, I am very careful what and whom I allow in to it. To have to have an ATOS assessor in my safe space treating me like a piece of shit was not something I wanted to allow in to my home, my safe space, but the DWP made it impossible for me to have my wish for it to be elsewhere so I felt very powerless.

I had nearly 3-weeks notice of the new date, which was 5th November 2015. I needed all that time to get my head and emotions around having the assessment at home but I could not know just how I would react to allowing the assessor in, knowing I had no choice and did not want her there.

My Care Co-Ordinator was present at the assessment as there was no way I was having the assessor in my safe space without a witness present and as things turned out I was very glad Debbie was there and witnessed all that went on.

The assessor showed up at my front door saying in the coldest possible tones “I am looking for [my name]”. I don't know what I said in response but with massive foreboding demanded I.D. from her which she took great exception to. She was not happy that I asked her for I.D. which I had every entitlement to request. To be honest, if you are showing up at people's homes you should have your I.D. round your neck or in your hand. She did neither and had to fish around in her bag for it, she flashed it so quick at me that I was unable to see what it said except I saw the ATOS logo on it.

I let her in, all the while she was complaining on and on to me and to Debbie about me asking her for I.D. I felt like telling her to shut the f*** up, that I was totally entitled to ask a stranger showing up at my door for I.D. and that I have to take my safety and security extremely seriously, but I knew she would not get it.

She walked in to my living room and saw Debbie sat there. She spat out “who is this?” I told her who she was. The assessor was obviously extremely unhappy to find I was not alone. At this point I was very glad I was not alone, I dread to think what would have happened had I been alone. I was disgusted at the disgraceful way she spoke to Debbie. It was obvious she had come with an agenda and we had upset that agenda, she was extremely taken aback and unhappy although the letter states that you are encouraged to have someone with you at the assessment. So the assessor had no grounds to complain about Debbie being there.

The assessor sat with her back to Debbie, hunched over a notepad, hardly making eye contact with me throughout the assessment.

She was very patronising and condescending, talking to me like I was a child. She posed questions in ways which prevented answers beyond simple yes/no responses which was woefully inadequate and frustrating. She did not ask questions in a way which allowed anything other than yes/no responses. I was not given space to expand or quantify beyond simple yes/no answers to explain how things really affect my day to day life. I was not asked what a typical day is like. I was not asked what the days I struggle to get out of bed are really like. I was not asked how I cope with everyday tasks such as cleaning or housework. She did not question me about all my health conditions as she said at the outset she would. In particular she did not ask me about my migraines and the enormous impairment they cause to daily life.

She refused to discuss my Complex PTSD saying “we won't talk about that as I don't want to upset you, which was not okay. Complex PTSD has a massive impact on my ability to cope from day to day. I would NOT have been upset if she had attempted to discuss it in an adult way rather than a condescending making assumptions way. It was a missed opportunity for her to gain insight into the catastrophic impact Complex PTSD has on my life. By ignoring my Complex PTSD, Dissociative Disorder, Personality Disorder and other aspects of my mental health she gained no understanding of how massively impaired my daily life is by the complexity of my mental ill health. She asked briefly about my depression but in a way which limited what I could say. Both me and Debbie mentioned self-harm and my daily battle with suicidal thoughts. But the assessor was obviously out of her depth at that point of the discussion and ignored everything we said about my mental health.

She asked if I am under an M.E. Clinic or specialist. I stated I am not as they only deal with short term cases, however it was not possible for me to mention that the clinic contact me annually to check on me.

I was asked if, on the days I struggle to get out of bed, I wash my hands and face? She asked several times, despite me saying NO each time. She was not willing to accept NO and bullied me until I changed my answer to YES to get her to move on. Her bullying was unnecessary and totally inappropriate. Debbie witnessed that and remains very angry about it.

It was at that point that I dissociated because of her bullying and began to shut down. Debbie told me afterwards that the “Fi” I became was not a “Fi” she knew or recognised. She told me that I gave the assessor less and less information as I gradually shut down from the shock of how bullying the assessor was.

I was asked if I am able to chop up food – I stated I cannot chop up food because of pain and loss of feeling in my fingers. She then said “but you can cut up your food to eat can't you?”. A simple yes or no did not suffice as I have to ensure I eat food which needs minimum cutting up because of pain and numbness in my fingers. It was not possible to explain the complex issues I have around food and eating nor that I have days I scarcely eat at all. She asked “but outside of the M.E. you know how to cook don't you?” and was stunned when I said “NO”

I was asked if I can text – again yes or no did not suffice. It was not possible to say I only do essential texts because as soon as I start texting the pain and numbness in my fingers makes it impossible to send anything but a very short message.

I was asked what time I go to bed at night but not asked what happens once I get to bed or how easily I fall to sleep. It can take 2-4 hours to fall asleep. I was not asked what my sleep is like or if it is disrupted. I was not asked what time I get up the next day. If she had asked any of those questions it would have been obvious to her just how restricted my life is by constant debilitating fatigue and how much of my life I actually spend in bed.

I knew as soon as she asked me what time I go to bed at night that she was totally clueless about M.E. It was such a totally inappropriate and stupid question to ask.

She asked where I catch a bus to town from. I showed her the bus stop outside my house. She asked if I walk to appointments seeking a black and white yes or no but my mobility issues are more complex than that. It was not possible to say sometimes I walk but slowly in constant pain and have to allow extra time. It was not possible to say if I go out I am back in bed as soon as I return home because walking, even just down the road to the shops or to St John's Court, has completely done me in. It was not possible to say I catch the bus up the road so I only have a couple minutes walk up the path to St John's Court and walk home after as I know I am coming back to bed. It was not possible to say I am in bed the next day because I went out, even for just a few minutes or because I walked, even just a very short distance because walking exhausts me and several days a week I struggle to get out of bed and am not mobile in my own flat nor able to make it out to my back patio to take out rubbish or recycling. She did not ask me how I manage when I have to go into town.

She asked me when I am fatigued and when I am in pain. I told her I am always fatigued and always in pain – she appeared stunned by those answers and asked “really?” to both answers. I was shocked she understood so little about M.E. that she thought there could be times when I am not fatigued or not in pain. There is no time, no day, no moment when I am not fatigued, exhausted or in pain. There are days I can do nothing because my entire body hurts. Everything in my life is carefully arranged because of the limitations from M.E. Everything I do is done through a haze of constant debilitating exhaustion and pain.

It was not possible for me to say I tend mostly to just go out to appointments due to having massive social phobia. I often find it too distressing and triggering to be out of my house as I am scared to be around people, cannot cope being around men, cannot cope with unexpected events, unfamiliar places, unfamiliar people or last minute changes to plans and so have extremely limited social interaction outside of appointments with health professionals.

As the assessment went on I gradually shut down until I told the assessor I was exhausted and just wanted to go to bed.

At the end of the assessment I was left severely dissociated, distressed and deeply traumatised. It caused a severe escalation of my depression, self harm and suicidality. I was left feeling terrified I will lose the disability benefits without which I cannot afford to live and cope with my disabilities and so was suicidal.

All of which was totally unnecessary and need not have been if the assessment been carried out in a careful humane way as we requested on my form rather than the extremely poor and damaging standard of assessment it turned out to be. It is regrettable the assessor did not heed our request.