Tag: mental health and relationships

The worst thing they can make you fear

TRIGGER WARNING for discussion of abuse and control

The worst thing my abuser made me fear was not what she would do to me. Actually I accepted that without question.

The worst thing to be afraid of is myself. That’s what my abuser made me most afraid of. Me. What I really am. What I can’t stop. What I would do to her. What I would do to everyone I loved. What everyone would find out in the end about me. What the people watching thought and how they’d take my loved ones away because of me (the watchers didn’t exist, I’m told, but it was too deeply engrained for that to make any difference now).

I was supposed to love my abuser, and that made it worse, because the revulsion I felt showed I should be repulsed at myself.

When rarely, I told what had happened, nobody heard or nobody believed, but she’d already told me they wouldn’t.

I escaped from my abuser, in physical terms. And I know I’m very fortunate because so many don’t.

The one thing we can certainly never ever escape from is ourselves. The one way my abuser ensured her power over my present and future as well as my past is this terror of myself. Add to that my “alters” (the child that screams unendingly because no-one heard her when it mattered; the violent lunatic full of anger as I’m tricked again and again by those who supposedly love me) – and my abuser is not only in my mind now but sickeningly in every current relationship and interaction.

I can feel her laughter and ridicule now. I feel surrounded.



Voids between my mind and others’ minds

I feel so sad and I’m doubting my mind. I clashed with someone I care about. It doesn’t feel right to put the details here much as I want to. Basically I felt we need to make a fact very clear to someone we are working with, a fact that ought to have been made clear from the start. In itself the fact isn’t right or wrong but it does totally change what we are offering the person and what they will expect and it’s absolutely necessary to say it. The person I clashed with thinks there’s no need to say it, it doesn’t change anything, nothing was ever promised. I tried to explain what I believe and he said he would write off working with the person completely.

There’s more to it but that’s all I can say here.

It sounds like a tiny thing but it’s shaken me and got me lost about how I see things and how others see them and the gulf between that. What I see as a clear duty when others don’t. What I expect. How I deal with uncertainty (rather, don’t deal with it). The gap there is between my mind and the people I care about. It’s brought back the ever-near memories of people telling me I expect other people to look after me, or that I didn’t keep my word, my responsibilities, when I was doing all I could to get it right for everyone and hurting myself to punish myself for my failings and still wasn’t good enough.

I’m sad. It probably doesn’t help I’ve been ill physically this weekend.

I know this blog has been too down and negative lately and I need to change that. I’m sorry.

Ginny xxx

Frozen, slipping, returning

I’ve a list of things I need to do. Call my energy supplier as my current gas and electricity plan is coming to an end. Write Christmas thank you notes (I always have them done by New Year so this is late for me). Type up notes for some admin I do to help my fiancé’s work. Read the material to prepare for a meeting on Friday. Clear up the house. Sort the TV licence payment.

Why do I feel like I’m drowning… no, stuck in a block of ice too frozen cold to move again? I can’t do any of it. Waves of exhaustion, vacancy, cold, fear, dread, crash over me even though I can’t find any immediate cause. I slip in and out of presence and dissociation. The guilt intensifies on every return.

My to-do list is an insignificant lot of things to most people, I know. I know if I told someone I am struggling with this they’d say it’s nothing and just day to day responsibilities. This brings back so many memories of times I’ve struggled before and family members have told me I have no responsibilities and I’m a spoiled brat. Here comes more guilt and fear wrenching inside.

What I have to do overwhelms me but it’s not really what overwhelms me – the waves, the cold, the dissociating and returning do. It hurts and takes all of me and if it weren’t for my fiancé I don’t think I’d be able to come back at all. I’d have no strength left.

Why now? When so much has been so good? (Ungrateful little brat, look what everyone’s done for you, why isn’t it enough – the voices scream, preventing me telling anyone about what’s happening because that’s what they’d say again.)

Is that just what trauma and depression and borderline do?

How can I try to escape from this ice and reach out and reach forward again? I know sometimes doing even the tiniest thing can make a difference at first. I forced myself to get up this morning, get dressed and put on makeup. Afterwards I was shaking and exhausted. Being more ill physically than usual doesn’t help. After some rest I made a little start on the paperwork I’ve just been sent that needs to be read for Friday. My mind was a blank for hours after that and I was gone for much of the time but at least I had achieved something not absolutely nothing. I’ll write this down in the journal I resolved to keep, to see if this helps me when I look back. I will be able to acknowledge what I did and somehow find a way to see good in this day and give thanks. Creativity sometimes breaks through the ice so I made a paper origami ball and did a few steps towards decorating the photo frame I’m giving my dad as one of his birthday presents. Then I really, really struggled with so much pain in my head and inside me, anxiety, hallucinations and unbearable voices and just… numbing cold.

I want to sleep now and I will soon and hope rest can shut off this state for a while. I don’t know if I believe even that right now. I forced myself to write this post bit by bit over a couple of hours because when I wake up tomorrow and read this, I’ll know I got through it thanks be to God, and something, however small, will be different in the morning.

Ginny xxx

Anger management courses – do they help?

I’m scared that I’ve become increasingly angry and less able to control it. Maybe I never could control anger. Under my abuser’s control I never felt it, except for a very few occasions where some feeling that probably was anger exploded, always severely punished. When I did start to feel it, when rebellious feelings grew, fear of myself almost always grew stronger, and so I channeled it towards myself with anorexia and self-harm. I lost control eventually, years later, but bulimia and binge eating, overdose and cutting still did well to numb my most frightening emotions. But then, and I don’t know why, I started to scream. Rage burned and exploded and my control was gone.

I did not learn, in the therapy I undertook for my personality disorder, how to control the anger.

It may not be the first emotion that takes hold of me but every difficult, unwanted, feared, painful emotion seems to work its way to uncontrollable anger that I can’t control. I still turn it against myself but it explodes outwards as well. Dissociation possibly gives me and others some protection but my “others” can get angry too and that’s so dangerous.

Recently, someone suggested to me that I could try an anger management course.

I’d never thought of this. On one level it’s an obvious thing to try. Why hadn’t I thought of it before?

I’d be very interested to hear about your experience if you’ve tried an anger management course, especially if you also suffer with PTSD or personality disorder/s. How did you do the course, for example a self help course or taught? How did it help or not help you? Is there a particular kind of course that will help those of us with PTSD or PD?

Thank you in advance.

Ginny xxx

House clearance

The house clearance turned out to be more emotional than I expected. The small local firm that did it were very good. Three guys came in a big van and 2 hours later I was looking at my emptied home. Unfortunately I was also looking at the large patch of hairball sick the cat had left under the bed without my knowledge which the workmen politely didn’t mention. Guess I can always hope they thought it was an unusual pattern in the carpet?! Actually I felt utterly disgusted. How badly had I been living that I could be unaware of a pile of cat sick?! That the damp in the bedroom had taken hold on even the one piece of furniture in that room I wanted to keep?

Clearing through my possessions in the days before the workmen came, as well as the hairball incident, left me with a question. How could I have let my home fill with clutter and hoarding, yet despite this frighteningly surging tide of possessions, I am still without certain much needed items? So many things incomplete? For example, though I’ve been over 2 years in my flat, I have not got the painting done and the walls are still patchy and stained just as they were when I moved in. The same shelves are broken in the cupboards, just as the day I moved in. I still don’t have a table to eat at. Yet I had 14 nail polishes pretty much untouched, baskets of broken jewellery, pieces of ripped paper I might supposedly use in a craft project one day, clothes stuffed tight in cupboards (shamefully hidden and many of them purchased in dissociative or irrational episodes for an identity other than “me”), and cluttering nick nacks covered in a film of dust.

My head was full with disgust at myself, confusion, failure, not knowing who I was. Who, what part of me, unquenchably acquired all these things? I am wholly responsible for it, but frighteningly out of control and unable to connect with who or why.


The neighbours must have thought I was moving out with all the bustle.

Despite the exhaustion and disgust I am gradually starting to see that this is a new start. My home is emptier. It is different now. The furniture I have left is not broken. It matches together as much as I can manage. Surfaces are no longer jam-packed. I can see space and calm and bit by bit I am attaining some of the mental quiet I so desperately need and I have been trying to achieve.

This is going to be a home I can make good for my fiancé and I; when we get married please God next autumn our home will be my flat. He has not had a home of his own, at least not one where he feels safe, for a long time. It needs to be different now for both of us. I need to look forward.

Ginny xxx

Getting stuck on a loop

I’m gradually coming to notice when I re-experience feelings associated to long past experiences of abuse. I’ve described this as emotional flashbacks. They can include re-experiencing physical sensations of events, but also and often more overwhelmingly, emotional experiences. This often leads to certain thoughts being triggered and impulsive, uncontrollable actions that aren’t necessarily helpful for me or others. (I say uncontrollable. I must still take responsibility for them though I do not yet manage successfully control them and the impact the feelings have on me.)

I’m also noticing that I re-experience feelings and thoughts associated to more recent events; events which are not nearly as damaging as the abuse and trauma I experienced as a child. Sometimes, I can identify that the event triggered a deeper memory, which to some extent explains my reaction. But frequently, I can’t identify this. It is like feeling stuck on a loop. It causes me a lot of guilt and anger at myself. I feel I am being childish and self-centred because I should just get over it. I feel guilty, especially when it leads me to think over and over a time when somebody upset or hurt me, because I ought to be forgiving them. If I am repeatedly thinking of the hurt and wrong caused to me, I am holding it against them, not truly forgiving and I am keeping a barrier between them and me. God forgives us fully and it is as though our offences are blotted out. When we receive his forgiveness, we are washed “whiter than snow” and He does not look any more on our transgressions. Who am I to think I’m so important that things that hurt me play over and over in my mind? I’m reminded of someone close to me telling me “nobody else is responsible for making you feel better” “I’m going to be completely straight with you and I don’t have to think about what you’re feeling”. Am I making other people responsible for my feelings by my inability to move on? Am I making everything about me? I really fear that.

An example of such an event and consequentially getting “stuck in a loop” occurred this weekend. It’s a fairly low intensity example. Yesterday, I was in the street when I was stopped by a charity fundraiser – there are many of these people in shopping streets in my city, stopping people and wanting to take their personal details and sign them up to make regular donations. This person both irritated and intimidated me immediately. I watched him approach a lady who was a little way in front of me and follow her up the street. He then came up to me, coming uncomfortably close and half-blocking my path. I think this kind of approach is particularly intimidating to me since I’m disabled, unsteady on my feet and walk with a stick (and in my mind it is insensitive and inappropriate to approach in this way someone who you do not know, especially someone who is clearly physically vulnerable). He started to ask me questions and I simply replied “no thank you,” and carried on walking as best I could. I am in no position to give money at the moment and do not want to be signed up to anything, and think the best approach is to firmly but politely refuse to engage with this kind of approach. He then continued to follow me up the street, very close, muttering behind me sarcastically “oh, well that’s just charming” and so on. I was at once frightened and suddenly angry. I turned round and by no means shouting, but firmly, told him “Would you please stop following me. I am not obliged to give you my details. I do not want you to follow me.” “Well that’s incredibly [*&$% expletive deleted] rude of you” he retorted. I told him this was highly inappropriate and asked for the details of the organisation he was working for as I would be making a complaint. Fortunately, I was able to get sight of the ID badge he was wearing as he told me “Good, I hope that you do, because you’re incredibly unpleasant!” and noted the details.

Now, this event should probably no longer be in my mind. I was not hurt. I was probably not in any danger despite his intimidating and verbally aggressive behaviour. Likely as not I will never see him again. I have never heard of the organisation he was working for and have no dealings with them. It was nasty but probably not personally directed at me. It is an unpleasant way for anyone to behave, and all the more inappropriate on the part of someone representing a charity. I felt strongly about that. But it isn’t really an important event. The damage caused to me wasn’t major or worth thinking about (beyond that tomorrow I may make a complaint to the charity as I don’t think he should carry on representing them so poorly or treating other passers-by in the way he treated me and the lady in front of me).

The intensity of the fear and anger I felt at the time was much more than it should have been. It flicked me to come very close to an outburst of upset and anger that wouldn’t have helped anyone. I was able to stop that by the grace of God. I went some way into dissociating, hurting, being out of it but thoughts spiralling in a way too much to catch, being on the edge of going into a nearby shop and impulsively spending, which is one of the responses I’m most at risk of when I’m suddenly angry or upset. Again, I was able to stop myself. Mixed into this was the thought, what if someone was watching me, what would they think of what I had done? Was it my fault and was I wrong? I went home. I felt very low and was starting to shut down and everything I’d planned to do that evening was too much. I’m ashamed to admit this.

I’m more worried right now though, that instead of this whole minor incident now being over, it has come back on this loop in my mind today, several times. My mind has compulsively played over the incident many times, very vividly, but until this has been going on for a period of time, I’ve been unable to acknowledge what’s happening, whilst also being detached from what’s occurring in the present (for instance, no longer hearing the TV that was on, no longer doing the task I was doing). The way my mind has been playing this experience over has been similar to the way obsessional OCD thoughts about bad things I’ve done or am going to do, take hold of my mind. All the emotions I experienced at the time of the incident have come back again. With each obsessional repetition in this loop, my doubt of myself and my own actions in the situation increases, so that I am more convinced that I did wrong, that it must have been my fault, that people were watching me and now know how nasty I am.

Why am I unable to move on from even such an unimportant event? Why are my feelings so extreme at the time and no lower some time after? Why am I so unable to limit the impact of the emotion and the memory of the emotion and event? Does it in some way I do not yet understand, send me back to memory of a more damaging experience? That would give some explanation at least. Or is my experience just totally out of proportion, making me self-centred, self-obsessed, childish?

This event wasn’t particularly emotive in comparison to events that take place with people I know and care about. When upsetting interactions with friends and family get stuck on a loop in this way, it can completely affect and impede my future interactions with them and feelings towards them. I feel this is all my fault through my faulty reactions, emotions and thinking. Ultimately I end up self-punishing and self-harming as the only possible escape and a desperate attempt to punish myself enough for my failure to be an adult and my failure to forgive.

Writing this, it occurs to me that this feeling of being stuck in a loop does not only apply to things done against me. It applies equally to hurt I have caused or fear I have caused others, and other mistakes I have made. Wrong things and stupid things I have done play over and over in my head. The intense feelings of guilt, shame, horror, pain, etc, play over in my head and diminish little in intensity over the years. I regularly have vivid memories of, for example, things said during an argument with my dad and step-mum 3 years ago, or something wrong I did in my work that I worried endangered a patient 5 years ago, a time I stepped out of line with something I said to my boss in a meeting 8 or more years ago… I re-experience all the feelings and they can really shake me. I become afraid of any situations similar to those in which these events occurred, maybe because I believe I’ll do the same wrong again.

Again I wonder if all the feelings I have, whether it be a situation of wrong done by me to others, or a situation of wrong done by others to me and consequential hurt, in some way are (a lesser intensity of) feelings that were overwhelming and terrifying during the years of my abuse.

I also know that in personality disorders, emotions usually reach a higher intensity more quickly, and stay at the higher intensity for longer, than in people without personality disorder. I guess that explains to some extent why the feeling hangs around for longer, though not the vivid mental replaying of inconsequential events.

I desperately want an answer and I think I’ll talk about this in my 1:1 therapy tomorrow.


I wonder have you had similar experiences? Have you felt stuck on a loop remembering experiences or having thoughts and emotions you want to let go, but can’t?

Ginny xxx

I’m sorry – I haven’t forgotten you

I’m sorry I haven’t posted here or visited your blogs in quite a while. I haven’t forgotten you. I know it’s not obligatory but I feel guilty being inconsistent ams not being there for others.

It’s been a few weeks of pretty big changes in my home life, family, friendships, work (or temporary absence of!), finances, therapy – not all the changes are negative however they are all demanding and not necessarily unsettling but all taking energy to work through. Physical pain is still having a big impact on me at the moment and I’ve needed to take things much more slowly than I’d choose. It used to be something I could deal with but now I’m not coping well. I feel as if I’m constantly saying this. It’s not am excuse but it is a big part of my life right now.

There is another event I’ve been struggling with, which has held me back from blogging. I had a really upsetting experience in an internet based support group and blog, in which I had previously trusted, thinking I was finding a reliable source of information, understanding and solidarity with other members as well as being able to offer support to others. I don’t think it is the right time to go into detail here about what happened although I will explain a little more in a future post. Please don’t worry – I’m okay and safe; I was never in any physical danger and I have ceased contact that was proving damaging. Fortunately, I had never divulged personal information like my full name or contact details. Also, just to be clear, this experience was absolutely nothing to do with this blog or any of the lovely people who visit it. It happened somewhere completely different.

The experience has had a big impact on me. I was very distressed. I felt a huge loss although also a huge betrayal. I got very scared of writing anything online, including in my own blog and in messages to anyone, although that is not necessarily rational. My obsessional thoughts were very triggered and the voices got loud. A whole range of feelings and thoughts spiralled out of control about how I trust other people, how I feel about getting support or not and being believed or not; perhaps most scarily, whether I’m harmful to other people without knowing…

On the positive side, the events have brought up lots of issues I need to discuss in therapy. They’ve led me to think about how therapy is changing the way I think. They’ve shown me ways I’ve started to react differently (for example, I did not follow through the compulsion to self-harm).

Most of all, it made me all the more thankful for the genuine and compassionate support everyone who visits this blog has shown me. It’s a rare and precious thing. THANK YOU.

I’m trying to get back into writing, gradually.

Ginny xxx

Your opinion sought – children seeing scars

WARNING: this post is on the topic of self-harm. If this may be distressing please proceed with caution. Thank you. 

I’d welcome any opinions or thoughts on this issue:

I have scars from self-harm, past and not so long past. Sometimes I don’t cover them. Usually I do. I do not mind at all people asking although I do not want to share the full reason with everyone. Too much to reveal, for them and for me. Not because of “what would they think?” type concerns but because the reasons I did it are very raw and intimate. A big reason I cover my scars is not wanting to upset people – this goes for people close to me, too, or maybe all the more – and not wanting to draw attention to myself by making people worry.

I cover the scars with clothes or when the weather is too hot or I want to wear something that wouldn’t cover them all, I use makeup  (designed to cover scars and not to rub off on clothes as ordinary facial makeup would). It isn’t possible to cover them totally but usually I consider it to be enough.

I am going to stay with my friend in a couple of days and she has two little girls, very young, 5 and almost 3. I’ve stayed with them before but never when it’s this hot. There is also the possibility we are going to take the girls to a kids’ pool and whilst I won’t be swimming it may necessitate wearing less. I’m worried about the girls noticing my scars. I will cover them with makeup but I’m worried that as it doesn’t hide everything, the girls will notice and might ask about it. The younger one probably not but the older one may. It may sound like a silly concern however, they are both very observant and pick up on things I would never think that they would.

I’m wondering, first of all, is it the kind of thing they are likely to ask about? Possibly it’s not something children would notice or they might not even know what scars are (as in making the connection that it means I was cut). I don’t know. 

Second, have any of you been in this position? If a child asked you anything, like what are they [ie the scars] or how did it happen, how did you respond?

I’m thinking this is a situation where the girls knowing any of the truth would be unquestionably so damaging to them at this young age that a small lie is the only possible course of action. An adult, if they notice the scars at all, would probably know that it wasn’t done accidentally and not believe my excuse, whilst a child, more likely to ask about the scars in the first place as children aren’t so socially reserved as adults, would probably not realise it wasn’t accidental and would accept the fake explanation I chose. I don’t usually opt for lying but this time it seems to me the only way to avoid causing harm.

Perhaps I should ask the children’s mum (who knows I self-harm) what she thinks or what she would prefer.

Just to be clear, I would never self-harm when with the girls or indeed, when with anyone or where the girls might see me do it – my worry is them seeing the scars I already have from past self-harm.

Any thoughts would be really welcome. Thank you.

Ginny xxx

For the first time in forever

“There’ll be actual real live people, it’ll be totally strange

But, boy am I so ready for this change!”


Yesterday was another little but notable step for me. It was my birthday recently and to celebrate, a small number of close friends came over for a bring-and-share lunch. This was the first time in a very long time I have done anything like this. The few close relationships I have are a very precious blessing to me. I never usually mark my birthday in any way and find it too embarrassing and uncomfortable. I am not used to having a home that I can invite other people to. Thankful as I am to be here, it has taken me a long time to get the courage to invite people over and this is the first time I have invited more than one person at a time. Actually, it is the first time for years I have been in a group of people in this kind of social situation, where I’m interacting with everyone for a substantial period of time. Also, it was my first attempt at a gathering where I’d be hosting and caring for everyone.

Building up to the day, I was excited and very touched that my friends cared enough to give the time to come and were spending such an effort to celebrate with me. In particular my dear friend L. was coming from over two hours away with her little girl to be here. I was also very anxious and feeling overwhelmed by worrying that I’d do everything okay, be able to make it nice for everyone, help everyone get along well (not everyone knew each other) and be able to do well enough with everything practically needed since I can’t stand or walk much right now. With everything that has happened in the last couple of weeks with work and my health, I was repeatedly tempted to cancel, but not wanting to let people down or hurt them, stopped me, and so the day came.

I was so grateful L. was there. Her presence gave me confidence and her beautiful little girl, overflowing with interest and happiness, made me feel better. L. helped me finish setting things out and without her being there I don’t think there’s any way I’d have had the confidence to go through with it.

It was a beautiful day of blessings. The food seemed to be well received and appreciated and everyone brought something to add to the meal (actually, leading to plenty more inspiration for my future Ten Dishes posts!). A lot of the simple practical things I had worried about, like whether everyone would be comfortable in my small flat where decoration and furnishing are still something of a work in progress, were actually okay. I’m very fortunate to have friends who are understanding of the time it takes to bring a home together. Everyone chatted easily together and it was possible to find common ground and interests surprisingly quickly given that not everyone had met each other before. The two beautiful children (one 9 months, the other nearly 3 years old) were adored and delighted in.

I was full to overflowing with thankfulness and the lovely illustration that people wanted to be there and cared enough to come and join in generously. The shame, worry and embarrassment I had felt beforehand was steadily taken away during the afternoon. I was struggling physically after a time and the pain was bad but I was helped and nobody was angry or expressed that they thought I should be doing more or was a bad hostess. I hope they really were happy not just saying nothing out of kindness. Mentally I felt drained and was aware that I could not concentrate as well as I wanted to, because I was “missing” things, not able to take in what people were saying or dissociating very briefly but repeatedly. However, nobody reacted as though they noticed or thought I was being weird. I wonder if they did notice or not. Were they actually being considerate and accepting of what was happening or could they not tell? I wish they could not tell but I don’t know… I’m sure they must have…perhaps I can check this with someone I trust most, like L. Nevertheless, things still seemed to be okay. I hope.

Afterwards, in the evening after everyone had gone, the pain and exhaustion were severe but I my heart was still brimming with the surprised joy of the gathering and the kindness everyone had shown. The gifts of God in friendship mean so much to me right now and help me believe things will be okay.

For now, I have several thank-you cards to write, as well as this very happy memory to think on!

“Because for the first time in forever

There’ll be music, there’ll be light…”


Ginny xxx

Lyrics from “For the first time in forever”  from Disney’s “Frozen” as sung by Kristen Bell. (How much my little goddaughters would approve!) Images with thanks to wikipedia.org and disney.wikia.com respectively.


A much bigger loss than they realise

When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.

With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.

I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.

We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.

My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.

Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.

All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.

Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.

First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.

This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.

And these areas are broad.  Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time.  Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.

Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.

It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.

Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.

I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.

In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.

This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.

Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.

If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.

Ginny xxx