Category: discussion points and suggestions

How prevalent is the assumption that disabled people don’t work or don’t have responsibilities?

As a disabled person, I’m pretty used to being seen as a problem, especially in the workplace, and sometimes all the more even when “reasonable adjustments” are supposedly being implemented. For example, in my last secretarial post, discussions about supposedly agreed alterations to my working hours would begin with explicit statements about how I “had to realise how terribly difficult it is”. I was pressurised not to attend medical appointments or follow medical advice. If I was in any way assertive about my needs (not disability related ones) once “reasonable adjustments” had supposedly been put in place, I was reminded of the “great leniency” being shown towards me and how my boss was allowing things most firms never would. It got to the point that I explored this with a manager. Was there something wrong about my performance that they considered they were being lenient about – if there was I would much rather they openly told me what it was, so that I could try to correct it. Oh no, said the manager, and she went on to tell me pretty much in so many words that it was the fact that I’d been allowed to return to work after a period of sickness absence and that [what had been agreed amounted to reasonable adjustments] had been put in place! Once I dared to be assertive that whilst it was agreed that I was working reduced hours, there needed to be a plan for how urgent tasks that arose in my absence would be dealt with (it was not okay for me or for anyone else for them all to be left for my return on top of my usual full workload), I was told by my manager that everyone knew I could not cope with the job. From then on, bullying and harassment continued, along with continually calling on the fact that everyone knew I couldn’t cope with the role. This was despite the fact that, until the point that I had asserted my needs, all my reviews and appraisal had been excellent and I had taken on many responsibilities beyond my job description.

I left soon after, feeling I had no other choice as my mental health was deteriorating so rapidly. I made a formal complaint, but the lies in the company’s response and the regulatory body’s disinterest meant I gave up. 2 years since this started, the impacts on me are still considerable, especially intense self doubt about whether I can take on the responsibilities of a skilled job and the intense emotions I feel when I try to take on more responsibilities now. I’m a good way off returning to paid work but I know these memories will be something I battle with when I do.

Looking back, I feel that although the company I was working for made “reasonable adjustments”, they did so out of a sense of obligation. They made them on paper but were not really willing to discuss the practicalities. I did not hide my disabilities from my employer at any point but when I had a period of particularly bad health they became more visible. I feel that the firm continued to employ me out of obligation but from this point I was seen as a problem, an inconvenience, “terribly difficult”, someone who cannot cope. As soon as I asserted my needs (both relating to my disability and not), this was unacceptable to them. I was no longer wanted. Looking back I feel as though I was acceptable so long as I never spoke out, so long as I never dared assert myself because I was so grateful for everyone allowing me to stay despite all the problems I caused. Whatever happened they needed me to fit their impression of me as someone who can’t cope. If I didn’t assert my needs, eventually the ever mounting pressure would have got too much and I would not have been able to cope. When I did assert my needs, they took this as grounds to announce that everyone knew I couldn’t cope. Whatever I did, it came back to this. If I stuck to my contracted hours and a task went undone, I would be told off for not completing it. If I worked late to complete a task (sometimes specifically with a manager’s agreement or even at their request) I was told this showed I couldn’t cope with my job because no other secretaries worked late (untrue incidentally).

So, I wonder, how much of this was done malevolently and how much came from my employers’ assumption that disabled people can’t cope with responsibility or can’t do the job? Yes, in the later stages I believe their lies were malicious or at least covering their own backs so that should I take my complaint further I would have no case. However I am coming to think that their underlying beliefs about me as a disabled person played a large part. (It could have been that I was actually rubbish at my job from the outset but then why was this never reflected in my performance reviews?)

It seems a very backward assumption that disabled people can’t work. Then, the other day I encountered the assumptions of a total stranger who had met me for a few seconds at most, that I’m irresponsible and don’t work.

I was about to get off the bus when the driver sailed on past the stop despite 3 of us ringing the bell in plenty of time. By the time we got to the next stop this had trebled the length of my walk home and this over-exertion has now worsened my symptoms such that for the next 3 or 4 of days I’d be almost unable to walk at all and wouldn’t be able to leave the house even to get to my medical appointments. Someone who has no way to appreciate what life with a disability entails might not realise the extent of impact of having to walk a bit further. The driver was very rude and dismissive when I asked why he didn’t stop and so I thought it worth pointing out the impact it had on me. He would not apologise and lied saying that the bell hadn’t been rung and what was it to do with him. This being the last in a considerable number of recent bad experiences with the bus company that have left me dreading bus travel (recently I was shouted at and ordered off the bus because I asked the driver where the bus was stopping during a temporary diversion and wasn’t willing to accept his answer of “I don’t know I’m not a taxi driver”!), I decided to complain and asked for the company’s telephone number. The driver flatly refused to give any details. At this point another passenger came up, pushing into me, telling me “Just get off the bus, you [expletives deleted] idiot! It’s alright for you, all the rest of us have responsibilities and work to get to! Take the bus number you idiot, he’s told you [more expletives deleted].” On top of which the bus driver nodded and smiled, said she was absolutely right, actually thanking her. Pretty much encouraging her.

I was furious with the passenger as well as the driver and it took me some time to work out why I felt so strongly. Part of it was the driver’s refusal to apologise, refusal to admit he’d missed the stop and pretending the fault was mine and generally very poor customer service, which really gets to me as I’ve worked in customer service for years and feel strongly about how I’d treat other people. I also ascertained he missed the stop deliberately to save time, though that is something of an assumption. But I figured out that what really upset me was the implication in the passenger’s tirade and the driver’s support of her.

“It’s alright for you” whilst the “rest of” the passengers have “responsibilities and work to get to.” She made the assumption that I did not have work or responsibilities, that I was different from everyone else on the bus – why, because she could see I’m disabled? “Take the bus number you idiot, he’s told you”. She assumed the bus driver had given me the information I needed and I was too stupid to understand (he hadn’t). Again because I’m disabled? And I should “just get off the bus” – why did she find that it was wrong for me to stand up for myself? Are disabled people too much of an inconvenience to the “rest of us” when we do? Should I keep quiet because everyone else has responsibilities and jobs that count more than mine? The driver supported her being verbally abusive. Perhaps he was just hoping she’d intimidate me into giving up so there would be no possible repercussions for him if I made a complaint, but in the context it felt like him agreeing I was stupid, an inconvenience and so unworthy I don’t even merit decent customer service.

Am I being paranoid? Was it not actually to do with my disability? Was the other passenger setting me apart from her and the rest of the passengers for another reason? I don’t know. Instinctively I feel it was very much to do with my disability and perhaps the fact I wasn’t behaving in the typically meek, apologetic, unobtrusive way it seems acceptable for disabled people to behave.

Hmmmm. To be continued at some point, I think….

Ginny xxx

 

Mental wellbeing scales…. What do you think?

This is the SWEMWBS. Er, bless you?! No, it stands for the “Short Warwick Edinburgh Mental Well-Being Scale” Maybe the longest possible name for the shortest questionnaire!

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I was given a copy of this to fill out on two occasions recently: when registering with a mental health charity locally in the hope of accessing a community-based personality disorders support group, and at the first session with my Recovery Coach. I’ve lost count of the number of questionnaires of this ilk that I’ve done since my mental health conditions wete first diagnosed, for example one or two page scales at the GP Surgery to rate anxiety and depression, to 10 page booklets at the personality disorders service, repeated to examine changes through my treatment. The SWEMWBS is by far the shortest of all these, which could be a strength. I still found it tricky partly as to my mind it seems to have gone to the other, overly simple, extreme. However that does all depend on what you want to measure and why. I may have found it tricky because it didn’t match what I wanted to express. What I want to express might not be what services, support agencies and so on, wish to measure. Arguably, services do need to make sure there is the opportunity for us as patients / clients / service users to express what we feel is most important and often this can’t be slotted into a tick box or numerical scale. I’ve been fortunate that people working with me have given time and importance to that which doesn’t fit into these kind of measures.

As part of their work, a member of my family is exploring initiatives to support and promote mental wellbeing. They are looking at using scales like the SWEMWBS to measure how people feel across participating in activities, and whether the way they feel changes. The activities could be social groups, exploring nature together, art and art appreciation, developing and sharing particular skills – generally community based projects. Reporting how you feel on long complex scales proved off putting and daunting, understandably. In my opinion, there is a certain conflict between the fact that the most respectful and detailed way to find out how someone is feeling may be simply having a discussion with no constraints on how they express themselves; whilst at the same time, to analyse whether a particular activity or therapy has helped, there does need to be some form of quantifiable (so usually numerical) analysis of changes in how someone feels.

My family member asked me for thoughts and feedback on the above and to share my experience on how I find using scales like the SWEMWBS. How meaningful is it? How does it compare to unrestricted feedback where we can express freely verbally or in writing how we feel?

I’d be interested to know readers’ thoughts if you have any you would like to share, whether or not you’ve completed these kind of scales yourself.

I could pass these thoughts on anonymously if you wished, or not if you do not wish.

Thank you!!

Ginny xxx

The Short Warwick Edinburgh Mental Well-Being Scale is copyright NHS Health Scotland, The University of Edinburgh, The University of Warwick (2008).

Talking with medical students (updated)

Particularly relevantly given my previous post, at the end of this week I’m going to be speaking with a group of medical students about stigma in mental health. The local university runs several of these small group sessions through the academic year. Attending one is compulsory for all final year students. The scheme was set up by someone from the Recovery College (which I must write the promised post about!) in conjunction with the university psychiatry department. Each session is led by two people with lived experience of mental health conditions and encountering stigma in healthcare environments. I volunteered to take part through a patient involvement network.

Most of the session will be question and answer and discussion, but first I have to speak for a few minutes about my personal experiences. I can think of many examples both good and bad of care I’ve received, stereotypes that affect me and those that care for me (especially specific to BPD), times my care and relationship with services has suffered because of discriminatory practices and rules, how often I’ve felt rejected and not believed when I’ve most needed help and the long lasting effects of this; also, I want to share times that have been good, such as the empathy I met with when I had my minor op last year which helped me cope with my panic and emotional instability at the time, and the encouragement I’ve found at the Recovery College in being valued for who I am and even for what I’ve been through.

This being my first time, it’s hard to know what the students will be interested in. What will they most want to hear about? What is most important for them to hear? What will they want to ask? I’ve had a little guidance from someone who has spoken at one of these sessions before and any more suggestions would be helpful. If you can think of anything particularly important to discuss, if you have your own lived experience for instance with your own mental health or as a friend, family or carer, or if you have a student or medic’s perspective, I’d be really grateful to hear any thoughts.

Thank you so much.

Ginny xxx

24.o2.2017: By way of update, the meeting with medical students was cancelled as the psychiatrist who was due to facilitate the session was called away unexpectedly. I’m due to  speak at another session in the Spring and afterwards will post about how it went.

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

World Mental Health Day – William, Kate & Harry

World Mental Health Day – William, Kate & Harry

I’ve been impressed by the work the Duke and Duchess of Cambridge and Prince Harry are doing to de-stigmatise mental health conditions and raise awareness of the importance of being able to access the help we need. You can read about what they have been doing today here.

To my recollection their work and their discussion of their own personal experiences (for example, following Princess Diana’s death) is the first time I’ve heard  a member of the Royal Family openly discussing mental health and wellbeing and the importance of responding with compassion not judgement and stigma. It’s encouraging to me to see this change. Recently, many friends of mine have met with really painful and dangerous discrimination and absence of help when they were really in need (as I have I too in the past).

I’m putting in an application for an opportunity through a service user involvement network to speak, from a service user / patient’s perspective, to medical students about mental health, discrimination and support. I’m happy students recognise the need to learn about it. I don’t know quite how this will progress or if I’ll be chosen but I’ll let you know.

Ginny xxx

Image thanks to http://www.aol.co.uk

Constant anticipation of the next error – and consequential disaster: Part #1

I try hard to look for good things to appreciate. I’m trying to counteract my anxiety and overwhelming emotions by looking for the positive, hopeful things that can come from a situation. (It’s something of a DBT technique which I’ll elaborate on in another post.) I’m told I’m not yet very good at finding positive things about myself. I think gradually I’m getting better at seeing positive things in the outside world.

However in some areas it’s hard not to not only feel overwhelmed by both emotions and external negative events and also to expect them.

Benefits is a case in point right now and it has been for years, every single time I’ve needed to claim a Benefit when I haven’t been able to work / haven’t been able to work full time, because of my health.

Today, I received a letter from the Tax Credit Office about an error made in my tax credits earlier this year, when I was working at the department store. I was aware of that mistake. They had incorrectly recorded the income figures I had given them and given me only partial information about eligibility. Consequently they paid me tax credits I wasn’t entitled to. The letter I received today was rather confusing but essentially confirmed that. So far, that wasn’t too bad – I will have to pay back the overpaid money when they ask for it but I already knew that.

Next, I opened two letters from the Housing Benefit Department. The first contained two award notices both almost the same but with completely confusing dates, entitlement and income figures. What’s that about, I wondered. One of them was marked “change in personal circumstances”. What change in circumstances? I haven’t had a change recently. I opened the second letter from Housing Benefits, with a certain sense of foreboding!

Yup, disaster again. The letter told me that the Housing Benefit Department had been informed by the tax office that I am in receipt of working tax credit, therefore I am working and my housing benefit has been suspended until I give them details of my new job and current income.

Oh my days. I assume they have received a copy of the letter I got from Tax Credits. If they took time to actually read the letter, they would have seen it was saying that I am not entitled to tax credits. If they had looked at the dates in the letter (not to mention previous documentation I’ve supplied them and previous discussions I’ve had with them about my receipt of tax credits) they would have seen that it referred to a period earlier this year, not to now. They also know that I am not working – I have given them proof that I am currently in receipt of Employment Support Allowance because I am not working because of my health.

So, my housing benefit has been stopped. I will have to contact my landlord on Monday to explain why the benefits payments have stopped. I will have to contact Housing Benefits and try to prove to them that I am not working. This will probably involve chasing around the tax office and the other oxus involved in my employment support allowance. I have to make a written statement and gather together copy documents from my employment support allowance claim and tax credits. Quite probably I will have to take this in to the housing office, queue for a long time to see someone, which physically I cannot cope with at the moment as I can walk so little. My anxiety has skyrocketed because of the financial problems this suspension in my housing benefit will cause. Worse, from my past experience, once one benefit gets stopped, all the other benefits get stopped too. I am anticipating that I’ll be contacted by the employment support allowance office next week saying they’ve received information I’m working so my benefit has been stopped. Then I’ll have nothing coming in.

This may sound like an exaggeration but it has happened to me and to friends of mine before. And it could all so, so easily have been avoided. How easily the housing benefit office could have seen that the correspondence referred to months ago. How easily they could have checked with the tax office to see if I was working. How easily they could have made a quick phonecall to me or my support worker, if something wasn’t clear or they needed a particular piece of evidence. Wouldn’t this have cost them less, as well as me? The situation would have been resolved in minutes. Instead they have sent out a letter, required a statement, someone has to take copies of this, take copies of documentation, probably see me for an appointment, restart everything, set up payments to my landlord again (God willing!). Even without counting the cost and distress and anxiety caused to me, it is a hive waste of resources and confusion for nothing.

Since I first had to claim Benefits in something like January 2015, I reckon I have been paid the correct amount I was entitled to for a maximum of one month at a time, before the next error or mess-up has occurred and at least one of my Benefits has been cut, stopped or refused incorrectly – and completely avoidably. Last year when I rented as a lodger in a private landlord’s family home, this array of errors left me so very close to being on the street; if it were not for an extremely generous friend who paid my rent one month, I would have been out with nowhere to go. It is hugely fortunate that I now live in a housing association flat where I will not be thrown out immediately if there is a problem with my housing benefit. It is hugely fortunate I have the expertise of my support worker who will help me get this resolved as fast as possible and stop me going to pieces in the meantime. Most people don’t have those two blessings.

I don’t want to complain and whinge and expect money for nothing. I don’t think I deserve other people’s constant support. I could very well have nothing. I need to try to become independent and able to support myself. Support doesn’t come for nothing and I should expect to take responsibility, not have everything handed to me.

I think one thing that makes it so hard is when you have been through every process as well as you can, given all the information asked of you, taken all the steps you can, and despite this everything still crumbles. My experiences over the years tell me as soon as there’s any stability, it gets taken away again through error or miscommunication, despite all your best efforts. And the error seems to have an effect like tumbling dominoes on all the other areas of your life there is any stability. Losing stability has immediate big consequences when you have very little to live on. It also drains all your energy, time and emotional resources, which go into trying to correct the error before disaster point (losing your home, no money for food, etc) rather than leaving you any strength to recover, contribute something to your community in your day to day life, benefit from opportunities that might make your situation better (and even maybe less dependent on social and state support, not that needing it is a bad thing). When you are constantly using all your resources fighting the next mistake and next disaster, trying to ensure that you have the basics you need to get by, in a state of anticipation of the next disaster so you can try to minimise or allow for its impact; when you feel as if you’re being knocked back, kept vulnerable, denied any security, despite your hardest work to set things right; then there is no way you can do more than just get by, in a constant state of strain.

So, I’m wondering what I can change. It seems I cannot change the fact that mistakes constantly occur, despite me trying my hardest to do the best I can for my part and to take steps to pre-empt the problems. I don’t want to feel so spent, trapped, angry, vulnerable and at risk as I do at the moment as a result of the repeated cycle of mistakes.

So, what can I change?

[Part 2 to follow, not that I have any answers yet! Thoughts are most greatly welcome, as ever.]

Ginny xxx

 

Managing money with Borderline Personality Disorder

I am bad with money. I panic about it. I’ll panic for days beside being able to sit down to look at my financial situation. Partly this is because it’s usually so dire and it’s a constant background stressor in my mind that sends me to extremes of distress when my thoughts are in the foreground and that I block out at other times. I even find myself dissociating from it. Additionally, there’s the fact that I find it hard to deal with figures and hold them in my head and follow steps through when I’m budgeting. I always did find dealing with numbers hard, even before I was particularly ill.

However, with help, for example from my lovely support worker or my very close friend L., I can list out all my money coming in and my expenses and I can draw up a budget based on that – even though the outcome for months has been that I don’t have enough to meet basic expenses. It may not be workable but I can at least get things down on paper.

It’s very hard for me to get to that stage but that’s not the biggest problem. The biggest problem is when it comes to spending. I have been very bad with money and very impulsive and out of control and I really want to change that. I must change that if I’m to stay out of debt and all the spiralling material and mental consequences.

Even if I have made a budget plan, when I’m most ill I do not stick to it. Best laid plans to waste, as the saying goes… When I dissociate, or flip, I am no longer in control. It’s my responsibility and I don’t want to deny that but I’m not mentally in control. I make decisions and act on impulses and spend money rashly. I act on a temporary conpulsion to buy things I’d never normally touch. Sometimes I know it’s temporarily squashing down the unbearable feelings. Sometimes I’m buying a different life. Sometimes I’m buying for one of my “others” or it’s the “other” wanting and needing it and making the decisions. Often I’m too far gone to have any awareness of what or why I’m doing it and afterwards I see what I’ve bought and have only a dim recollection of why and when i did it.

Afterwards, infallibly, I feel terrible: guilty, disgusted, that I’ve been selfish, greedy, confused, angry with myself, scared, an absolutely unbearable feeling I can’t describe. There’s dread there. There’s shame – a lot of shame. There’s panic. There’s something more. Yet I still do it. There’s always the next time I lose control and dissociate and spend again. I’d call it a kind of manic dissociation that leads me to spending (it leads me to impulsively angry and needy actions too), as opposed to the frozen and numb dissociation that accompanies self harm or the safe dissociation of slipping away from this world into the imaginary one in my head. The manic dissociation is probably the most socially dangerous.

I really want to break this. I can’t stop the dissociation and impulsivity yet but I’m trying to find ways to reduce its impact. It’s become very important right now because, having had problems for nearly a year with my disability-related Benefits, with my support worker’s help we have now resolved the problems and I am due to receive some back-payment of money I should have received some time ago. This is absolutely great for me because it means that I can pay off my arrears and make a stable budget going forward and it looks as if finally I will have enough to live on! I am so so so thankful for this. It also means that I have a lot more money than I usually do (even if only temporarily til I pay the arrears). This is scary because I know that I cannot be trusted with it.

I texted my support worker straight away about the back payment and he’s going to call me this afternoon so that we can make a plan, pay the arrears and make an appointment to look at my budget again now that I’ll have a bit more money coming in. I’m hoping we can come up with some things we can do so that, at the times I’m being impulsive and not in control, I can spot this quicker and ideally, my access to money could be strictly limited at these times. I’m not sure how we could achieve that but maybe he will have ideas.

I know that ultimately I need to get to the root of what’s causing the impulsivity and learn to take back control of my actions at those times and stop the dangerous behaviour. I’m hoping therapy is going to help me find this, though it worries me I’m so far through therapy and still I don’t think I’ve changed in this area. Until I can do that I need to try to stay safe and be as responsible as I can.

I’m interested to know, if you or someone you know has Borderline, or indeed any other mental health condition, does it affect how you / they feel about money and how you / they can manage it? Is it an area you feel vulnerable or find stressful? In all the years I worked at a hospital and in the various services I’ve been seen in, it isn’t talked about very much.

Just recently I saw a useful self-help booklet at the PD Service I’m seen in, on these kind of issues. I’ll share here the booklet here later today or tomorrow (I think there’s an online version). It was about the first publication about managing finances which I’ve come across targeted specifically for patients.

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

To blog anonymously or not…

When I first started this blog, I was certain that I was going to keep it anonymous. By “anonymous” I mean, for example,  I don’t use my full name, I avoid posting anything that would indicate the town I live in and I do not post photos of myself or my loved ones. Recently, I’ve been wondering whether I might change my approach slightly, for instance, disclosing a little more about me, or sharing photos sometimes, or no longer refraining from talking about local groups, services, activities etc that might give away where I live.

It’s a hard decision. I was talking about it with my friend S who suggested “Why don’t you ask other bloggers what they think?” I thought that was a great idea.

So, I’d like to ask you a question: what do you think about blogging anonymously versus revealing personal details? Was this a difficult issue for you? What led you to choose how much you reveal and whether you write anonymously? If you started your blog anonymously but later decided to share more about yourself, or vice versa, what led you to that decision? If you’d like to make any comments I’d be very grateful. Thank you.

I’ll share a few of my own thoughts on the decision I’m trying to make.

Ironically, it’s partly because some of what I post here about my emotions, experiences and relationships is so very personal that I refrain from sharing personally identifiable information. Many of the experiences I talk about are very painful and intimate, especially those from my childhood. If someone I know as an acquaintance or colleague (rather than a very close friend) came across my blog and learned what had happened to me then I might feel really uncomfortable to say the least. At the start of my blogging, anonymity let me write more freely. Also, I didn’t know what kind of reaction I might meet with. Allowing myself to be identified could have made me vulnerable if I encountered unpleasant or harassing “followers”. In fact this hasn’t happened at all; since I started my blog I’ve been very blessed to have caring and supportive visitors to my pages who have become friends and that’s a huge gift.  THANK YOU! It’s now partly because you have become friends that I’d feel comfortable sharing, and indeed would like to share, a little bit more.

However I also know that if I were to be identified my blog might affect not only me but my friends, family and the professionals who care for me.

I’ve written about relationships breaking down and hurt I feel. I’ve shared sensitive experiences that involved others, such as my childhood abuse and relationships in my family when I was growing up. When I mention someone else I never give their name, only an initial sometimes, but if I were to be identified through my blog by someone who knows me (say, through work or a friend of a friend) then other people I’ve mentioned in my posts potentially are more likely to be identifiable too. It’s a small world, as the saying goes, and I don’t have that many friends! 😉 My friends and family may not want to be identified, or they may be upset. The anonymity of the internet does not give me the right to be horrible about people and I try hard not to write personal things about other people or things I wouldn’t say to the person directly. However I’m inevitably only writing my own experience and perception. In another person’s view it may not be balanced. On the flip side of this, I try to write positive things and express gratitude about the good friends I do have in my life and it would be nice to share more of that.

As well as considering my friends, I have to consider the hospital and my doctors and the therapy programme I attend. There aren’t many specific personality disorder services in the UK and if I say where I live, which hospital I attend will likely become clear to anyone else vaguely local with knowledge of PD. I might worry about anyone making a judgment about the hospital or therapy on the basis of what I write. It’s just me, after all.

Equally there is a lot about the support I get that is great and I would like to share this to help others. Having experienced at least 15 years of mental health issues, slowly I’ve come across sources of support and services that can really really help, some in times of crisis and some day to day. A lot of them are not easy to find. I’d love to write about them and how they’ve helped me, in case this in turn helps others and because I think they deserve recognition. So far I’ve held back so as to avoid revealing my location. Perhaps that is over-cautious of me.

You get the picture that I’m in two minds about this at the moment!

Ginny xxx

Slipping through our fingers

There have been several cases in the news recently, in particular two this week, of children suffering unfathomable cruelty at the hands of their parents / caregivers. Much has and will be made of the failings on the part of social services and social workers. How could the horrors and suffering go unnoticed and why were concerns not followed up, staff nor taking a more joined up approach, so the children could slip through the net?

I don’t doubt that there certainly were failings in the services. I’m not denying that. I can’t imagine the guilt the workers involved in those two cases are feeling right now. I’ve suffered myself and so did my mother and so have several other people I care about, because of failings in the organisations that should give support and protection, which let us fall through the net without intervention in times of crisis and without promised follow up or communication across different services. Sometimes the services involved have seem totally unaware of the harm this causes and unwilling to take responsibility. That hurts even more. Fortunately I have never suffered anything approaching what the children in this week’s cases did.

I’m not trying to deny that there were failings and I don’t want to hurt anyone who has been through similar experiences. However I think the somewhat understandable jump to publicise the blame attributed to the social workers and agencies masks some important points.

First, the perpetrators of the terrible abuse the children suffered were their mothers, father’s and family members. That’s the greatest horror. It is terrifying that as humans we are capable of inflicting such suffering on another, let alone on one of our own family or our own child. It’s particularly horrific that a mother can do this to her own child. It so negates every good and nurturing thing a mother is. It means no relationship and no home is immune to evil actions and absence of love.

Secondly, that is such a frightening fact and we want to know why. How and why can a person do that? What does that mean about what’s possible? About our human race? That sounds like an overly broad concept really. But I think it shakes us. Can we conceive that our world is one where what should be the safest and most protective relationship, mother and child,  is used to inflict fear and hurt and pain?  We don’t want to. We at least need some explanation. It’s easier to label the failing of a particular social worker or agency, because that we can understand. That we can name. What brought the abusers to use their own children that way, we can’t.

Thirdly – and this is something that’s hard to explain but significant to me as a survivor of childhood abuse – these horrific abuses can and do happen in secret and undetected. Trying to come to terms with what happened to me and questioning over and over whether the things I can remember done to me are true, I’ve often doubted myself and told myself it must have been my fault or I must be mad and inventing it all, because at the time nobody else realised what was going on and nobody intervened and people thought my family was normal (er okay maybe not but they didn’t often suspect the full truth). These two tragic cases in this week’s news show the awful fact that abuse much worse than what I suffered can indeed continue in secret. Therein lies the abuser’s power to control, manipulate and deny.

Fourthly, no more resources are coming for social workers and care and protection teams at the moment. The little glimpses I’ve seen from my work in hospitals, psychiatric services, care teams and so on has shown me loud and clear that there simply are not enough hours in the day and not enough people on the ground to have the contact and communication and time to spend directly with children, families, patients in need,  as well as following the ever more extensive proformas and completing paperwork that is required to meet the rules and regulations (which are supposed to ensure good care is happening but at the same time take you away from doing it).

This is no new or ground breaking feeling. I think most people in nursing or caring services have been saying this for years. But it’s still frighteningly swept under the carpet and denied by those in power. When I worked in a service that supported teenagers and young adults with mental health needs and social support needs, I would take the minutes of clinical team meetings. In one such meeting, changes to documentation for care planning and recording were being introduced, which would require nursing staff to (a) spend much longer away from patients, sitting at computers completing databases and reports and (b) in many cases require nursing staff to spend already limited professional development time on training in IT packages, not in patient care.  Of course, the aim of all these whizz new care planning systems was supposed to be a magical improvement in compliance with regulations about good care. However, nobody could answer who was going to be delivering the care during the time that the already over stretched nurses were completing the compliance paperwork. I wonder whether there’s a box in the risk assessment screen to record the increased risk caused by the fact the nurses and carers are filling in the [expletive deleted] risk screen instead of assessing the patients? 😉 Time and time again there was no answer to this impossibility. In that meeting, one or two nurses directly asked, how in the same shift with the same staff,  were they to fit in their work with their patients, as well as completing the new compliance activities being introduced. How could they do both? Which was to go when the time ran out? In my eyes the response was appalling. The nurses were told that was an unacceptable attitude to display and there was simply no choice and the compliance work was to be done. This came from a senior clinician who I had greatly respected and her response was totally at odds with her usual very reflective approach. Of course I don’t know the history with that particular member of staff who asked the questions and perhaps there was more to it than that, but there seemed a forced denial of the impossibility of continuing to provide good care and the level of presence on the ground with those we are caring for,  which is so important if we are to prevent tragedies like the children who slip through the net where abuse and suffering goes undetected.

I left the service I mentioned because more and more changes were taking clinicians, and support staff like myself, away from being able to maintain the personal contact with patients.  (I’ve since regretted leaving, I’ll admit.) Clinicians left too, at least in part due to stress and sadness around similar issues. They were a great loss to their patients, in my opinion.

A little later I worked a temp cover role as a secretary for the legal team that supported my local county council’s child protection services. Round about this time I thought about training as a social worker. I didn’t in the end. I thought I’d find far too many situations where my hands were tied and too many times bureaucracy stopped me doing the good that was needed.

….

I cry for the children that suffered and for those who so want to be present on the ground to help those at risk but who are taken away and whose voices are silenced when they highlight the lack of resources and impossibility of meeting the demands of keeping children safe in the field, and complying with everything that’s supposed to be ensuring children’s safety. One thing is sure and that’s that it is far too easy to be silenced – again both in the case of the victims and the carers pointing out the shortage of resources to help them. Let’s keep on speaking out.

Ginny xxx