Category: discussion points and suggestions

A question for bloggers, and the outline of my blog

A question for bloggers, and the outline of my blog

A special thank you to those of you who have commented on what posting schedule you’d like to see and those who have shown their support. Today I’m writing to update you on the new outline and posting schedule I’ve decided on; also to ask a question to other bloggers.

From your responses so far to my recent posts, it seems that topics you would particularly like me to write on are eating disorders and life with / after trauma and abuse. I will make these topics main categories on this blog. The main categories will be: PTSD (including life with and after abuse and other trauma); eating disorders and body image; borderline personality disorder and dissociative disorders; mental health and finances; mental health and work; living with physical health disabilities as well as mental health conditions; question time (writing in response to questions you and others have asked me – this will of course encompass a wide range of aspects of mental health conditions and cross over with other categories on this blog); in the future I want to add a “help” section where I will outline coping strategies that help me, mainly regarding PTSD for instance things you can do that may help during a flashback.

The posting schedule I’m going to start off with is one weekly journal-style post and one weekly post on one of the above topics. I may be able to increase this but I think this is a reasonable aim to begin with. As mentioned before I will post outside this schedule at times. I think I need to choose what days of the week I will make my two regular posts. I’m thinking Wednesdays and Saturdays but I may change this – I’ll let you know when I next write.

You will have noticed the change of name to Dignity Beyond Trauma and at the end of the week I will write a post explaining the new name.

I have upgraded my site plan so will be giving this site a new and hopefully more accessible look over the next few days.

Finally, I have a question for other bloggers. Do you use another form of social media as well as your blog, for example Instagram or Twitter? If so what benefits do you feel this brings to you and to your readers? What should one consider before linking your blog to another kind of social media? It’s something I’ve been considering doing; I am not going to attempt it right now as I need to focus on sorting this blog but I am interested in the future. I’d be very grateful to know how it worked out for you. Thank you in advance.

Ginny xxx

Going for it – currently making changes – thank you for your understanding

Going for it – currently making changes – thank you for your understanding

Okay. Deep breath.

It’s time to start upgrading this site. It means a great deal to me and I am nervous about doing it. At the same time I really want to make this site better for you, lovely readers, and more meaningful for me and others.

As part of this, I will be changing the name of the blog and changing the layout. I am sorry that in the short term this might make the site appear messy and confusing. Thank you in advance for your patience and understanding. As much as possible, I will try to explain changes as I make them, however at first this may be difficult and there may be some delay before I can write posts. Please bear with me.

As I’ve been looking over this blog in preparation, I have been astounded at how it has developed, albeit gradually. I had no idea that I had written over 300 posts! I’m so grateful to you for following me and for the interest, caring and compassion you have shown so far in your comments. Thank you.

Ginny xxx

What would you like to read in my revamped blog?

Some big changes are coming here at intothisbreakinglight, including a new name. See my previous post, Changes Ahead .

What would you like me to incorporate in my revamped blog? I want to help, as well as sharing my journey, so I’d love to know what you’d be interested to read.

Here are some elements I’m considering including:

– A specific section collating suggestions and resources for living with PTSD and complex trauma; what has and hasn’t helped me. I need to find out how to create this. Sifting through chronological posts is just not accessible for readers in my opinion, especially if the reader is exhausted or distressed.

– Similar specific sections regarding Borderline Personality Disorder and eating disorders / body image.

– A regular “question time” where I write a post in response to a reader’s question. Maybe once per month at first.

– A weekly journal-style entry to share what has been happening in my life and plans for the near future.

– A regular posting schedule. I don’t know yet what frequency I’ll choose. I will also post outside this schedule but I think it would be good to have a regular schedule I always stick to (even if I start with just one weekly journal and one other weekly post).

– I meet with medical students and researchers to share my experience of living with mental and physical health conditions. Loads of interesting questions get asked in these sessions. I think I may start writing some posts expanding on these questions (of course, not breaking any confidentiality).

These are just some of my plans. What do you think? Are they any good? What else would you like to see?

Ginny xxx

Changes ahead

Changes ahead

I’m going to make some big changes to this blog over the next week.

It has been many weeks since I’ve posted regularly. My husband has been coming through major surgery for cancer. Another family member has been through severe trauma. We have been struggling through a heavy load of financial issues since last autumn. My PTSD symptoms are worse. I’m not coping with day to day basics as I want and expect myself to. I could go on.

However a big reason I want to make changes in this blog is that my posts have been too sporadic and too distressed and distressing. I don’t want this site to be just me venting and screaming about how hurt I am. That doesn’t help anyone.

Yes, I want to be totally honest in what I post. Totally real. I don’t want to turn the blog into a falsely cheerful, superficially positive story. After all I’m talking about very present and painful trauma, illnesses and struggles. I am not going to pretend that I have all the answers or that I’m “over it” and nothing can touch me.

Yet I am more than the damage done to me and the hurt of every day. I want to try to find that. I want to write about that. I want to be thankful for all of me and all of every day. Also, I want to incorporate more focus on what helps me cope and even heal.

I want to have a regular posting schedule and more defined sections on this site so I can share what’s happening in my life week to week, but also share information about what helps me and may help readers, answer readers’ questions, post in response to reflection about what’s happened to me in the past, how I tried to cope and why. I want this blog to be helpful to readers, partly through reflecting what living with PTSD and borderline personality disorder is like, partly through sharing resources and information.

Big changes are coming up. Please watch this space! Thank you!

Ginny xxx

I want to make changes in this blog

I want to make changes in this blog

I want to make some changes to how I write this blog.

A lot of everyday life feels @&)!%*€ awful at the moment. My husband has cancer and is having major stomach surgery next month. He has 3 other operations due and that’s assuming there aren’t complications of the March surgery. It has been horrendous since November trying to sort out our state Benefits and just when it seemed it was sorted, I was told I had to have a reassessment of my disabilities for one of my Benefits and had to complete a 25 page form and send around another 20 pages of evidence in with it. I have a face to face assessment 9 days before my husband’s surgery. This brings with it the worry my Benefits will be stopped or reduced if they decide against me. My disabilities are all worse than when I was last assessed but you hear nothing but horror stories about Benefits assessments. Our money could get cut off whilst my husband is in ICU after the operation. We have other financial worries as well. We have had a whole series of let downs from people that should be helping us, including doctors and nurses and support workers. We’ve been brushed aside and labelled as worriers or nutcases because we have mental health problems – when in actuality my husband has multiple tumours in his body. When I have severely painful disc damage and degeneration in my spine. We have complex and deteriorating family relationships to work through and little support.

I could go on.

I want to scream. I don’t know if I’m crumbling or exploding but I feel I’m on the brink of going to pieces. I don’t know when I last slept through the night. The nasty angry dangerous version of me is getting out more and more as dissociation takes over. Right when I need to help my husband.

I need to make this blog different. I have become more and more sporadic in posting. When I’ve posted at all it has been sad and angry, as the result of an overflow of emotion or a need for an outlet of some kind. Having that “let out” is important but I don’t want it to be all this blog is. When I started writing I wanted to be able to express myself and also to be honest about what living through mental and physical health conditions is like. A lot of that is difficult, but there are good times and strengths too, and I want to reflect that. I want to reflect learning and gratitude too. I want to try to explore different aspects of my conditions and what helps. I want to post regularly, with more structure.

I need to make plans for how to change.

Ginny xxx

The guilt I feel when I’m met with no response – Part 2

This is Part 2 of a 3 part post. You can find Part 1 HERE

I wonder how much of my misinterpretation of emotional facial expressions is because the people I grew up with, my current family members and I myself express emotions in a different way from the typical?

It occurs to me that I’m told that often I show no emotion outwardly, or that people can’t work out what I’m feeling. In a family member’s words, “we just have to have some kind of reaction out of you,” and “we have no idea what on earth is going on with you so it feels like – aargh – we can’t be dealing with this!” I’m often told this when internally I’m having really strong emotions of loss, hurt, upset, abandonment and fear, and having flashbacks. Sometimes I’ve wanted to keep my emotions hidden. Almost always I’ve tried to turn my feelings inwardly so as not to bother or hurt anyone else with them.

However at the same time I’ve frequently thought other people understand what I’m feeling inside (but don’t want to discuss it so I just have to keep going) when it may later transpire they had no idea what I was feeling. I will then find it really hard to believe they had no idea. I will also be upset because my attempt to keep inside the sad feelings I have, to keep going as you’re meant to and not draw attention to myself, then backfired and seems to cause anger and upset and accusations of being childish, spoiled, rude or disrespectful, and of making other people responsible for me. People have said things like “It looks like you’re accusing me of not looking after you,” “I’m not responsible for how you feel,” “Its not anyone else’s job to make you feel better,” “You’re a spoiled little brat”; I’m told I have to stop thinking about my own problems, should push them aside, should think what other people have gone for me, etc. Which is often exactly what I’ve been trying to do and nearly broken under the strain. I don’t know how I get it so wrong. I don’t know what other people are seeing at these times that is childish or rude etc. If I did I would have some chance of correcting it.

This reminds me that as a child being abused, I was daily really distressed, inevitably expressed it (til I learnt better) and got no help. I was at best ignored. More often the punishments redoubled and threats got worse – more threats of how I was breaking up the family, of how the couple of people I had and loved would die because of me and graphically how I would find them, of how my parents would be taken away. I was told I was a liar, faking what I was feeling, behaving as I was in order to cause worry and hurt to my abuser, to punish them because in some way I didn’t get what I wanted. One of my abuser’s paranoia about us being watched increased too. Her bizarre, possibly psychotic behaviour, and ridiculing of me, came to the fore. I tried my hardest not to express any feelings, even physical feelings. When I got ill I was terrified what would happen when my abuser and others complicit in the abuse found out. Basically I got no response or a terrible response, and none of the help I needed, from my main abuser and the person enabling her.

Both my abuser when I showed my emotions as a child, and family members now when I try not to show my emotions, said/say that I am childish, spoiled and hurting others.

When I do express my emotions now, the reaction from my family is rarely positive. Occasionally it is, but often it isn’t. The fact that it fluctuates is really hard to deal with. But that’s another story for another post.

My abuser’s emotions could change in a couple of seconds so I had to be constantly on the alert and do what I could to stay safe. She was either emotionless in all her expressions, or furious, or distraught, or ridiculing me. Occasionally she was happy but you got the sense it was only on the surface and sometimes it seemed like a trick, especially when it quickly flipped to anger or ridicule. (Her severe psychotic episodes were somewhat different.) Whilst I had to be on the alert to her emotions, I didn’t learn anything from her about normal emotional expression.

My other immediate family members’ emotions are also hard for me to judge, in facial expressions and verbally. I can fail to spot the onset of anger with me. At other times I’m overwhelmed by how they express it. I often interpret anger when they are actually feeling concern or upset. I interpret disinterest or rejection when they say there is none there.

So…. on the whole that does seem quite messed up, doesn’t it!?

To be continued in Part 3 (which will be what I thought I was going to write about originally!)

The guilt I feel when I’m met with no response – Part 1

I was reading about how people with borderline personality disorder interpret emotion in facial expressions. I came across a study that had found that people with BPD are quite similar to people without any personality disorder in how we perceive emotions in facial expressions, however, those of us with BPD are likely to perceive neutral facial expressions as communicating “negative” emotions*. If someone is not displaying a positive feeling in their expression, we are likely to interpret a negative feeling. Of course, facial expressions are a somewhat personal and subjective thing. Additionally, I am not sure whether the finding was that we tend to interpret the perceived negative emotion as directed at us (eg the person is fed up with us) or as a non-personally-directed emotion (eg the person is sad, the person is frustrated after a bad day). Perhaps the study didn’t differentiate. I must try to revisit the study online and I’ll post a link in the comments if I find it.

Two things rang true to me. First I agree that I’m likely to infer from an expression that isn’t warm / positive that the person feels negatively. I’m not sure whether I actually see the expression as negative, or know it’s neutral (maybe “not letting anything on”) but a neutral expression for me means the person’s feeling is negative. Second, once I interpret a negative emotion (from whatever expression) I will usually be absolutely sure it’s directed at or because of me. Even if there are abundant clues that it’s because of something else, even if logically it can’t be because of me, this is my default assumption. Cue massive guilt and a desperate urgency to put things right. My first thoughts, my deepest emotions, my bodily reactions, are all based on that. Even flashbacks or memories involving deep guilt (where I know I hurt someone in the past) can follow.

This can all happen before any words are spoken.

However, I do the equivalent with speech and writing too. If anything is left open, ambiguous or ignored, I often feel I’ve done something wrong, or caused irritation or anger or displeasure, or that the person doesn’t believe me.

To be continued in Part 2.

* Note: by “negative” I mean feelings like sad, angry and so on. I don’t like using the word “negative” as it suggests something wrong with the feeling. This isn’t what I mean. All feelings are valid. I couldn’t think of another word. Perhaps “unhappy”?

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.