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

 

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Needing too much again

I need someone. And there isn’t anyone. It hurts.

I know that’s ungrateful. It really hurts right now and I’m very low. There’s never any answer to this longing need as we have no call to expect it to be answered when we’re adults. And I do have people. I have my GP, my support worker, the project worker who’s helping me continue my volunteer work, and my weekly art therapy. I have my friend L and her family. These are much more than many people have. I’m so fortunate to have art therapy and to get support towards volunteering and to be able to ask my support worker for practical help managing Benefits and finances. All these are extra blessings that help me go on. I’m thankful.

Why does it feel so dark right now? Why am I shattered and crying and really near giving in? Why am I still longing for someone to be here and hold me? I really wish for a friend here, someone who would be with me in some of the worst times when I’m scared and can only cry. The little side of me, the child, is hurting and my escape world too close, pulling me in stronger whenever I’m alone. Either that or I feel utter pain and loss. For all the support I have, I have no friends here near me. Let alone talking to anyone or sharing what it really feels like, the two people I know in the city where I live have ignored me or said they have far too much going on to meet at all. Based on so many lost relationships so far, I assume they find me too much of a burden to have any contact.

I cannot trust anymore as I used to try to. I’ve learnt what happens to friendships when I’m honest or admit I need help.

The police are still searching for my mother. I can’t begin to describe what I’m feeling knowing she’s missing and what it means, the indefinite loss, no answers to what happened to me…

All the time I was seen in the personality disorders service, I fought the feeling that they didn’t believe me, thought I was a fake, didn’t believe what had happened to me, didn’t believe what I was feeling when I was overdosing and suicidal, thought I was just making threats. They never kept me safe. I gradually built a tiny bit of trust in my group therapy. I found some things out this week that pretty much proved they didn’t believe me. And that took with it any trust I’d built and and hope that any of them, the service or most of the other group members, thought I’m anything other than a fraud and evil and nasty and manipulative. And anything I had gained in therapy starts to unravel and the voices in my head are right.

I’m trying to be there for my friend R and keep giving and listening and being responsive and compassionate. But I’m on the edge of a precipice with him and so close to falling. I can’t keep holding him when nobody holds me. Nobody helps me.

God holds me. God – “and I will say to You, my rock, my stronghold, my God in whom I trust.” God knows me better than I know myself. God knows my inmost being. I used to fear this. I used to fear Him because He knew how bad I really am and all the evil that will get out that I can’t control. But I just can’t see anything anymore. I can’t have any certainty myself and I can’t put my trust in anyone else. All my feelings seem twisted and wrong and corrupted by the abuse. I trust God. He sees. He sees whatever I do.

I don’t know. I’m confused. I have an uncontrolled childish need for comfort and not to be alone.

I have to fill in forms for going to see the lady who is helping me with goal setting and voluntary work tomorrow. But I can’t get my head round them and feel too low to do anything but sleep.

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).

What is it okay to protect for ourselves?

I still can’t figure out why I’m crumbling so much trying to support my friend. Partly it’s because the trauma he’s suffered and needs to talk about is so close to my own experiences and I don’t know how to cope with my own emotions about my trauma, and bad as I feel about this, I can’t always cope with someone else’s experiences, the even stronger emotions this gives rise to in me and the overwhelming emotions they are also feeling. It’s as if I absorb the pain and feel it 3 times over – my own pain and distress, my pain for them, and their pain and distress.

But this isn’t the only reason. When there’s no link whatsoever to my experiences I’m still feeling panic, dread, boiling frustration (inappropriately), unease, fear… and terrifyingly, too many emotions that are too close to those I felt when I was caring for my mother (who was also my main abuser). My conscious feelings towards my friend are nothing like what my feelings towards my mother were so why are these experiences occuring? Very raw feelings, as well as flashbacks, hallucinations and panic attacks are increasing. For some reason the situations with his health deteriorating out of control, hopes for things being understood resolved and treated then being delayed time after time, his near desperation, his rapidly overtaking weakness and physical degeneration, even his need for me, is triggering the feelings I had when I was with her. This scares me. It’s nonsensical. He’s nothing like her. The situation is not the same. Yet I can suddenly feel just as desperate to escape. I don’t know why because he is generous, good, caring, honest, he wants to help me, he does not judge me, he worries for my wellbeing and he supports me greatly in the faith we share.

Why does his need for me scare me so much too? He tells me I’m the only person he trusts to tell certain things or to give comfort. I am thankful and sort of honoured that he trusts me but I don’t want to be the only person. That isn’t safe for him. I am only one person. Yes, I care, I pray, I do not judge (well, wish not to, with God’s help), I can empathise deeply; but I’m only a normal person. I can’t keep him safe, heal him, I am not the total good he thinks I am. God gives hope. God gives safety under His care. I am only one person. I am thankful he trusts me but I don’t want him to trust and confide in me and not the doctors or other professionals who can help. If I’m honest, I cannot be the only person because it isn’t safe for me either, as well as for him. I cannot be the only person who knows when he is in danger. I cannot carry that or keep him safe. I cannot be the only person he can turn to because despite my best desires I cannot infallibly be there and there will come a time I don’t do the right thing or the thing he most needs or that I hurt him unintentionally and I don’t want him to be in danger then.

Which brings me to: what time or mental or emotional resources can we protect for ourselves? He needs me desperately and constantly. As well as practical help, there is rarely more than a couple of hours that I’m not listening, emotionally supporting or encouraging him or at least trying to. I might be coping more stably, or having lower levels of the currently overwhelming emotions, if I had more breaks, time separate from him, time to meet my own daily tasks and duties, time to keep my commitments to others, time to pray, time just to rest. But what would he do then?

When is it okay to protect time and mental resources for myself? The Lord is with us always. He always listens, always answers and always holds us in His Heart. Jesus gives His life for us. We are called to emulate this, to join in the sacrifice He made and pour ourselves out in love. If I’m to follow Him, to offer my life too, then I need to be there for people in need, always not only when it’s easy or convenient. I have felt the hurt myself of people I’d counted good friends cutting off or cutting back contact when I got more ill and being alone when I most needed contact with friends and to know I wasn’t going to be left for my weakness.

So I just cannot limit my availability to someone in desperate need. But I’m crashing up against my own physical and emotional limitations. What is the loving response? Admittedly my friend is not my only calling and responsibility. I have a calling to my family, my volunteer work, to run my home responsibly, to manage bills and finances and so on. In a way I have a responsibility to my own health and wellbeing too, though that’s hard to admit. Though that’s a fight in my head to. I should deny myself to reach out to bring God’s love to others. Then again the Lord created me, wants me, loves me – perhaps not only so that I can be denied and weakened? At the moment every responsibility except to my friend is falling to the side. I have no reserves left for anything else. That really does not feel right. I feel more guilt for it, especially not having the energy for family, for contemplative prayer or for treating my home that I’m blessed to have with due care so everything is in disorder.

This is all very uncomfortable and I’m so tired. I need to seek guidance.

Ginny xxx

Failing as a friend

I’m failing so much as a friend. My friend R is going through a terrible situation, or many terrible situations. Daily there seems to be the next piece of devastating news.

He needs me. He trusts me.

I so want to be there. Be generous. Love. Hope. Be patient. Do every practical thing I can and be there and listen. Be warm and somehow say something, pray something, still be there when he’s losing strength.

I’m scared. Scared I’m watching him die.

Why am I failing in compassion? Right when it’s most needed? Why am I feeling dread and frustration and exhaustion? Struggling with freezing when I want to respond compassionately? Like my brain is just shutting down in overload. I need to be there but I’m overwhelmed with pain for him, but also overwhelmed completely by his need.

I’m scared I’m the only one he trusts, only one he speaks to about certain things. It’s dangerous.

I can’t be this.

Why am I getting unable to respond or even angry? Explosive inside? I’m failing at the most important things in friendship, love and compassion.

My chest hurts. Something is rushing in my ears and I’m dizzy. I thought I was going to faint earlier….

Ginny xxx

 

 

 

I don’t remember why – the guilt of my dissociative episodes

It is scary sorting through piles of possessions I do not remember buying.

As part of my recovery work I’m allocating time to take care of my home, household related tasks (bills, organisation, housework etc), in order to take responsibility for living an ordered life, to not get into trouble or overwhelmed with unpaid bills and tasks ignored until they become insurmountable, and to make a safe calm and even beautiful home. I had no home for many years, moving from room to room, moves often prompted by my mounting distress. When I was blessed to find this place, it took a long time to feel at all safe or dare to believe in any stability. Then gradually, it became an escape, flight not by constantly moving around but by means of a protective enclosure. Which is good in some ways and something I still need when things are too much, which is frequent, but now it is time for my home to be more than that; even a place and a life that supports my health.

Part of this is continuing what I’ve been trying to do for some time, which is clearing through accumulated items and clutter and organising the things I decide I do need. I’ve been working on this for some weeks or months on and off, tackling different areas. I’ve acknowledged for several months in therapy and with my support worker how I bought and accumulated items as a desperate attempt at escape, distraction and protection. I acknowledge how out of control my spending used to be and too often still is and how impulsively I buy things when in my dissociative episodes, apparently driven by some desperate need at the time that leaves me sick at myself and painfully empty afterwards when my consciousness returns, a massive blank missing in my memory and emotion, but the fallout of my actions apparent – money spent, arguments had, horrific things said, tablets taken, sometimes alcohol drunk and most of all items bought (usually clothes, makeup, accessories, things I’d never buy for myself “normally” or rationally). I hate myself then, most of all for the money spent on myself and the hurt I’ve caused other people.

I’m coming face to face with all this as I’m clearing through hoarded possessions. Much as I’ve been aware of and fighting these problems for months, it’s still very scary finding things I don’t remember purchasing and don’t know why I have. Perhaps it’s even scarier because I don’t really know why I do this when I’m dissociated. Why? Why do I buy things? Why do I become what the evidence means I am in these times – selfish, irrational, irresponsible, needy, childish, bad? What else am I doing in these times? The violent emotion that takes over and hurts people around me, but still I can’t control it – who am I and where is it leading? Why do I behave in ways I can’t remember, that people close to me say are terrible?

I’m scared. I want to take responsibility. I’m trying to carry on gradually sorting out my home. It occurs to me whether looking at items I bought in these dissociative states where there are huge memory gaps, will help me connect at all with what I was doing and who I was at these times. I don’t know.

Ginny xxx

Ten dishes challenge #6: chicken stew and exploring wheat-free

Since the new year, actually I’ve been much better than usual at cooking meals, though usually I haven’t managed to remember to take a picture to add to this series, hence the lack of updates. A significant reason I’ve done better at cooking is that I was preparing food to share with a couple in my block who were in serious financial difficulty, and also cooking for another friend who is very unwell and struggles to eat at all let alone cook.

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I’m motivated to cook when I feel it’s to help or care for or simply for the enjoyment of someone else. This can help me overcome feeling too exhausted to do it. When I’m cooking for others, there is actually some joy in it even if I’m battling the chronic physical pain. The thoughts and voices that taunt me that I don’t deserve good food, must not eat, fill my head with repulsion at myself and greed and failure, do not come so loud when I’m cooking for others and sharing the meal. When I’m with others, I don’t binge eat and I cannot purge food. Perhaps it isn’t the ideal way out of these eating disorder symptoms – I have to be able to feed myself for myself in the end – but the more times I do cook, do share food, do manage not to binge eat and purge or restrict for long periods, the quieter the voices become even when I’m alone. It’s a very slow process and can still be awful but I think it’s a strength that will slowly grow.

The other major change in the last month is that since I was in hospital with stomach problems, I’m on a wheat-free diet because I was advised to try this. So I’m finding out new recipes or adaptations to recipes. As much as possible, I’m finding foods and ingredients that are naturally wheat free, because a lot of replacement products are very expensive, especially the processed ones. A very small loaf of gluten free bread will be £2.50 rather than 80p for a similar sized normal loaf; a packet of wheat free biscuits may be up to £3.00 rather than 75p or less for regular supermarket biscuits. I can’t have these things regularly on wheat free, at least not when I’m relying on Benefits whilst I’m signed off work. The plus side of this is that it leads me to cook more and eat more fruit, veg, beans, meat and dairy. My food bill will increase a bit nevertheless but I don’t think it will be unmanageable if I’m very careful to go for cost effective recipes. In fact, I’m often enjoying finding a new variety of foods and the altered diet. For example, I’m going to try making my own bread using wheat free flour. I discovered these funky coloured carrots that were tasty roasted:

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It’s not all saintly. Chocolate definitely still features in my diet! 🙂

For the first couple of weeks I was out of hospital, my stomach was very unsettled and I was mainly eating rice, rice crackers, cooked vegetables and fruit, peanut butter then gradually some egg and cheese as well. Most meals were looking something like this:

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Slowly, as my stomach is a bit better, I’ve wided my diet again with meats, yoghurt, various treats or desserts like chocolate, or fruit bars, and I’ve tried some wheat free cereal a couple of times. It’s a gradual process and I’m still feeling unsettling effects from the stomach problems I had.

I’ve also returned to using my Nutribullet, which I find most helpful for upping my vegetable and fruit intake with juices, ensuring I have high fibre intake and consuming things that can be harder to get into my diet. In the winter, I don’t enjoy eating a salad as I might in the summer, but I can make a yummy smoothie with some raw spinach and mixed leaves, avocado, banana, apple and a little lemon juice.

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The result does slightly resemble the bathroom suite my parents had in the 1990s, but I promise it tastes good. (Warning – in my experience, home made juices, whatever the ingredients even if you use brightly coloured fruits, tend to turn out green or brown. This may not look appetising however if you can overcome the colour they usually taste good.)

Yesterday I made a chicken stew with lots of veg and mashed potato, which I was very pleased with as I used not to be so confident cooking meat. I had the day at home so was able to pace the preparation better than usual. There was plenty left over that went in my freezer.

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Thanks be to God for helping me to rediscover some joy in food, some opportunities to share and eat with others and enjoy it, and gradually continue on the path to a more healthful diet and feelings around food and my body.

Ginny xxx

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.

How long their words stay with us

I’m trying to persuade a friend who is very ill to go to A&E tonight, or at least call 111. I wish I was where he is and could take him.

He is not at all well in so many ways. He’s waiting for several operations.  The worst danger tonight is that he has unbearable pain and symptoms to do with blood clots he has; we know with these symptoms that there is a danger of a blood clot in his stomach. We know he should seek help urgently in these circumstances with these symptoms; medics have told him this.

The main reason he is very reluctant to get help is what was said to him by a doctor the last time he was admitted, a few days ago. The doctor made a range of sarcastic comments about him to nurses and another doctor and said outrageous things to him including that hospitals are for people who are really ill not timewasters like him! This was when he’d been admitted when he’d attended as he was instructed to for an ECG and scans. He was found to have three bloodclots in his leg, as well as the numerous other serious problems for which he is due to have operations.

I cannot conceive what would lead a doctor to say what this person did. I know anyone can have a bad day. Anyone can dislike someone. Doctors, nurses, HCAs and other staff in hospitals are under a critical amount of pressure, now more than ever. But what would lead someone to say such bitter, accusing, unsubstantiated, false things to a person they are specifically there to care for? Did the doctor actually believe it? Or was he somehow venting anger, hate, judgement, for some reason onto my friend?

Not only this but without asking any questions to determine his mental state and without advice from the psychiatry team at the hospital or the community mental health service my friend is seen in, the doctor said to my friend that he should be Sectioned, and started trying to arrange this. Was he assuming or insinuating that my friend’s physical health conditions didn’t exist and were delusions? In spite of countless scans and test results and reports? Had he branded my friend as attention seeking because that’s the stereotype he holds of people with the mental health problems my friend has? Did that stereotype have such a hold it negated the physical evidence in front of him? Or does he regard people with mental health problems as unworthy of help or care however much they need it and think instead we should be shut up in institutions out of the way of those who he thinks do deserve help?

I’ve been on the receiving end of this numerous times. I’m really hurting for my friend and knowing he’s been left in so much danger now. Whatever the reasons behind what that doctor said, his words have told my friend he’s unworthy of help and must not ask when he needs it. My friend struggled enough with that already. He has had enough abusive people telling him he deserves pain, deserves bad, is asking for it. I don’t know exactly how it is in my friend’s head of course, but I know from my own experience how much louder memories that tell us we are unworthy, that confirm what our abusers told us, scream at us than any fledgling sense of ourselves and our value can. Words like this doctor’s join with the voices accusing and taunting us and they do not fade; they take a grip of us and punish us if we do not obey them.

My friend is in unbearable pain now and potentially great danger, and I’m trying to persuade him to go to A&E or if he cannot bring himself to do that, to call 111 for advice. I’m praying that if he does speak to 111 – when he does, please God – the advisers that speak to him are compassionate and show him there are people that do want to help and do have compassion and will help and believe him.

What this doctor said to my friend was awful by any standard, I think. Still, I wonder do people, especially people in authority roles (such as those who determine the medical care we get), know how much difference their words make, for good and for bad? I think words do have greater power for those of us with BPD, with histories of trauma and abuse and rejection, and no doubt with many other health conditions too. This is our responsibility to be aware of and to try to learn ways to cope with and I’m starting to see that very gradually,  with a lot of time, we can. It would not be at all fair to demand that other people treat us more carefully than they treat others. Actually, this is one of the things I fear demanding of others. But when we are already in crisis, desperately needing help, it would help so much if those caring for us knew the lasting difference their words and actions can make.

Ginny xxx

 

 

Two hospital visits and “The Gas Man Cometh”!

The past week has been a mix of unexpected, scary, painful, exciting, relief and changes.

I had been feeling worse than usual physically but had put it down to all the flu bugs around, cold weather and the fact I had been very stressed in the preceding month. However, it wasn’t flu. Just over a week ago I had some horrible symptoms I won’t detail here. On calling 111 for advice they sent an ambulance straight away. At the hospital I was found to have [ahem alert don’t read whilst eating your dinner!] bowel obstruction. Thankfully they had caught it in time before things became more serious (if left, it can cause a rupture in the intestines). I had IVs and they erm, did what they had to to clear it, X-rays, then I had to have more IVs for fluids. I ended up being readmitted the next day because I was having symptoms again so it was a scary couple of days. They would have kept me in but there was a bed shortage. I’m home now with several medications and guidelines to follow about diet and drinking enough.

I am so thankful this was spotted in time and treated. The doctors, nurses and HCAs were all kind and caring and made some scary, nasty things as okay as possible, and reassured me. They were busy but still took time.

I have some changes to make now. I have had to stop several of my medications because their side effects could now cause problems with my bowels. I need to discuss this with the GP to find alternative medicines and ways to manage because I needed their beneficial effects (eg for pain relief). Fortunately I’m due to see a specialist pain clinic in a month’s time. Also, I’ve been told to cut out wheat from my diet to see if this makes a difference. Even though I don’t have celiacs, some people can have other problems with wheat. Bowel problems do occur as a complication in other conditions I have (fibromyalgia, POTS and hypermobility syndrome) and people can find going wheat free to be helpful. I’ve started this and so far thankfully I am not missing wheat too much at all, though I’m still only able to eat a little so that may be why.

I’m hopeful that with these changes I can keep things better, though we don’t really know exactly why the obstruction happened. In the meantime I’m fighting not to get too down through some of the difficult effects I’m still going through. I am very achy, pain is worse as I’ve had to stop some of the medications, and I’m still stupidly weak physically (the fibromyalgia is badly exacerbated which again is to be expected as after any illness). I have had bladder incontinence for years because of the fibromyalgia and nervous system problems; since the bowel obstruction this is much worse and now distressing bowel urgency and leaking if I can’t go right away, are added to that. I’m praying this is temporary or at least that the GP can refer me back for some help when I see her next wek. I used to be too disgusted and ashamed to admit to that side of things but now after everything that’s happened in the last few years it doesn’t seem such a horrendous thing to admit it, though I still get upset and feel horrible when I have worse incidents.

The other problem that has loomed large is I had no heating or hot water for 23 days! The most incredible saga unfolded between my landlord, the boiler maintenance people and the boiler manufacturer and fault after fault was found with my boiler and the flue.

This song seemed apt!*

Thanks be to God, as of this evening everything is fixed! I had a most enjoyable and appreciated shower. Boiling kettles to wash up, clean and have a wash was not the most fun, though it’s what my grandparents did daily as a matter of course. It has been very cold some of the days I was without heating and a friend very kindly lent me a portable electric radiator. On the plus side, I’m likely to be entitled to compensation for the multiple mistakes made and inconvenience caused. I have to apply for that from my housing association.

In more exciting news, today I attended the first session at the Recovery College, which I’ll post more on shortly. It was an introduction to how one can become involved in mental health research, bringing a service user or “lived experience” perspective. It was more inspiring than I’d expected and left me feeling I have something of value I could bring to shape research materials, methods and how research findings are communicated.

Another brilliant event this week is that my friend who has been homeless for a long time, has at long last got a place in a hostel. It’s a good hostel in a safe area. By no means is this an end to his difficulties but it is a blessed answer to prayers and struggles to navigate the way through the council, the housing list, support agencies, forms, waiting lists, assessments, phonecalls….it goes on. What he’s going through is terrible and scary however I pray this is the beginning of safety and a little stability. Thanks be to God, from the depths of my heart, thanks be to God.

Ginny xxx

*”The Gas Man Cometh” by Flanders & Swann. Thanks to Hawkmoon for the video.