A Different Kind Of Crisis Care

April is a bit of a blur for me. I have not been well at all (and had been ignoring warning signs beforehand) but it finally got to the point where even I had to admit I was unwell. It was a bit of a perfect storm in terms of precipitating factors (which I don’t want to go into here but came from several areas of life and were largely out of my control), to be honest some of those things on their own would be enough to knock any bird off it’s perch – but a lot came at once and because I had been ignoring other warning signs beforehand (which was under my control but I’m having a hard time learning to cut myself slack and not try and paint a mask on) and it all kind of came to a head.

I carried on attempting to persevere – turning up to work, pretending things were OK etc. But by that point my body and my mind had already gone through the mill a bit and it wasn’t until I got to the point I was unable to remember being in various meetings at work, unable to travel from A to B independently, and even not be able to do the washing up, tolerate having my beloved ratty boys around me or remember to eat or drink, That I finally started listening to those around me and admitted I might need to take it easy for a while and look after my mental wellbeing. I am someone who lives with severe mental health problems every day but goes to great lengths to live a life of someone who doesn’t…and inevitably I can’t keep it up forever.

It’s been a long, hard slog – and one that felt like it was only going from bad to worse for a good few weeks. But I’m finally starting to piece myself back together – but tentatively. This has been a period of significant crisis – of which I probably haven’t had now for about 6 months since my life became a lot more stable and manageable. However, for the first time, we navigated through this crisis using the resources that were already available to me – but just more flexibly. I did not need intervention from the crisis team or home treatment, nor did I need to spend the night in the decisions unit, crisis house or a ward – and this is new to me but so much better. Yes, I did need medical attention on several occasions and the emergency services were also involved several times but these were all well dealt with and swiftly able to be handed over back to my normal care.

As well as being mentally unwell I have also struggled with the after effects of several head injuries which has resulted in an elongated period of concussion making me physically less able, struggling with memory, processing and managing tasks etc. This has been something I’ve found particularly difficult as I couldn’t do the things that help myself. Hats off to those that live and manage life with a more serious long-term brain injury. It really is hard.

So what helped manage this crisis period? I have several things at my disposal now that I have not always had in the past – or have had these things limited and therefore my ability to utilise them wasn’t great.

A safe place: This is the first time in a number of years that I’ve gone into a crisis and had a safe place in which to attempt to heal myself. A stable, accessible and safe home has not been a given for me until very recently. In the past year I’ve had the physical safe place but not always the means to access it. This time, I was able to use my support hours flexibly so my awesome team of Personal Assistants (PAs) could help me stay at home as much as I needed. This is so basic and something a lot of other people don’t even think about but for me has been something I’ve never had. It’s the absolute baseline of maslow’s hierarchy of needs and without this there is little point trying anything else. It makes me cringe when I’ve been in crisis previously and been sent back out into the cold with no safe place to be – told to “use my coping skills” and maybe offered a follow up phone call – how could anyone ever think I could successfully pull through a crisis without that? I spent years beating myself up because I couldn’t – but now I’m starting to realise that wasn’t OK and no one should have expected I could make it safely through crisis without a safe home.

Personal Assistants: OK so I know this definitely is something I am fortunate to have – but I only have them because basics like accessing home, cooking warm food and feeling safe are not possible for me without assistance. My PAs have been in place in some format for over a year now but this is the first time they’ve been allowed to help me as they see fit – previously they were under very tight restrictions as to how many hours they could work and were not guided by the mental health team or each other. Now they are well supported with external supervision, by each other and by my care co-ordinator if necessary – they are able to appropriately help me have access to the tools and resources so I can get myself back on track. In this time of difficulty they took more charge than they usually would on my daily life – making decisions about whether or not I had day shifts, cooking for me and making sure the ratty boys were looked after – all things that functioning Ellie can usually manage. This allowed me to free up spoons to help me just get through the day safely.

Mental Health team supporting flexibly: Particularly in the last year I have been actively told to not reach out for help from services (and indeed I stopped doing that even if it put my life at risk) and even been bullied and blamed for not managing in adverse situations. However, 6 months ago things changed and I got a new care co-ordinator and additional support from a senior member of staff. This also coincided with input from an OT from a charitable organisation to help with my eating disorder. With these people in place I have rarely had to ask for help – because it’s there if I need it. They all responded in a compassionate, non-judgemental and non-punitive way. I wasn’t made to feel like I was a crap human being, or guilty for how I was struggling. They discussed risk and self harm openly with me – wanted to find out more about how this was for me, and most importantly did not make me feel like I’d failed when risk did occur. I had phonecalls or appointments a couple of times a week that I didn’t have to beg for or explain myself to someone who had never met me before. Just a gentle catch up and helping me break my day down into small, manageable chunks. I was assured they were there, and to please ask for help if I need it. The OT even was able to come round and help me process my PA’s timesheets which were due and very complicated to do and something I just couldn’t fathom managing (which further freaked me out because I was worried my PAs wouldn’t get paid for their hard work). With this gentle, flexible, empowering support I did not need the input of any additional crisis services, and it has tailed off gently as I now don’t need it as much – this is different from the very sudden ending when working with Home Treatment for example.

Supportive workplace: I am incredibly fortunate that my management are more on the ball about my mental state than I am – encouraging me to take things easy and supporting time off before I would let myself do those things! They have been unconditionally supportive, kept in touch and allowed me to take control of phasing back into work in the best way for me. In addition, I did something I have never previously done and put an out of office reply on – specifically stating that I was taking time out to look after my mental health. I was incredibly anxious about doing this but the response has been people knowing that I’m not working at 100% ability, and other colleagues being incredibly supportive and welcoming on my return. Knowing that my livelihood will be there for me when I’m better helps me pull through much faster I feel.

Friends and family: I struggle in asking for help from anyone full stop, not just services. So reaching out to my social networks is difficult. However I have some amazing people in my life who are sometimes quite proactive and forwards with their support. Which I’m very grateful for as I’m often unable to ask or articulate that I need help. On more than one occasion I’ve had friends turn up because they suspected I needed help and was unable to call for it. I’m so fortunate to have these people in my life – and the others that just send gentle end encouraging messages or little gifts through my letter box. It all helps and it all means so much.

Going back to basics: Especially because I had a head injury as well as my “normal” non functioning, I really needed to strip life and the tasks I had to complete right back down to basics. This involved things like batch cooking so I could have the same lunch every day – taking off the decisions and food preparation so that I could concentrate on eating it. It meant literally only thinking about hour or even minutes ahead. It meant saying to people “I’m sorry I can’t do this for you right now, I just need to take time to concentrate on my mental health”…something I find incredibly hard to do but was important that I did.

Doing what I feel my body and mind needs without judging: I often don’t do the things that I know inside I need to do – because I place a lot of judgement on myself or worry about judgement from others. But I’ve really tried to listen to my body, my mind – their most basic internal needs and go with them. Yes that means I haven’t left the house without at least 3 cuddly toys in my bag and wearing noise-cancelling headphones in about 4 weeks. But it’s what I need to make the world less overwhelming and allow the smaller parts of me to feel comforted and safe. I even turned round and apologised to my colleagues last week because I’d just had several back to back meetings and I needed to curl up under my desk with my cuddly toys and grounding playlist. They didn’t bat an eyelid because they knew that by doing that I was assuring I could make it through the work day.

I’m still a long way from “optimum Ellie”, this has been a significantly difficult period and the precipitating factors are not resolved nor have they gone away. But I’m getting there and slowly learning to make the right choices – even if I’m embarrassed about them or worried about judgement.

I had a beautiful interaction with a consultant in A&E last week who had known me when I was a “revolving door” case several years ago. She reminded me how broken and hopeless I was back then, and although she could see I was going through a difficult period, she was amazed at the way I was managing things compared to back then. It felt good to tell her I was working and rarely came to A&E anymore. She told me that she was now the mental health lead for medics in the department and that it was people like me that had inspired her to keep combatting the stigma surrounding people like me in the department. That felt good.

I’ll get there. But bear with me for a little while whilst I work on myself for a while.

Caution: Do Not Open This Attachment

Attachment is a bit of a touchy subject for anyone with a BPD label. Whether or not we have attachment issues stemming from childhood, we will probably develop an unhealthy attitude towards attachment during our so called “BPD recovery journey”. This looks different for different people. I have friends that will openly admit and claim attachment to just about anything – including professionals. I know others who have been let down and hurt so many times in their lives that they won’t let themselves form any attachments to anyone, or anything. Then there are others, like me, who are so scared of being labelled as “attached” or “dependent” and the connotations that brings with it within services that they will go to great lengths to force themselves not to feel any attachment to any aspect of their care or interactions with services, or if they do – they won’t admit it.

I’m used to comings and goings. I’m well rehearsed at goodbyes. I’ve lead quite a transient life for the past two decades, across more than one continent. I grew into an adult in the Middle East – where the countries of the Arabian Gulf have a constant ebb and flow of international expats. I’ve been to uni, I’ve travelled, I’ve been in many different jobs, friendship groups and lived in different places. I’ve been in and out of units, hospitals and day programmes – each time with a different population, even if it is the same place. I’ve had more than 8 care co-ordinators in half as many years. I’m used to moving on, I do it well even though I struggle with changes. Everything comes to an end at some point and I accept that and am OK with it.

I’ve also had plenty of constants in my life. My parents live in the same house I grew up in, I still live in the city I was born in (albeit a very different Sheffield!). I have friends who I have known for years. I don’t think I have unhealthy attachments.

So why am I so paranoid at this label? This judgement that just one part of my life puts upon me? In services, showing signs of attachment is bad. But in the rest of my life I am praised for my ability to make appropriate connections and maintain them (though it doesn’t come easily – I have to work hard at this). Even in my work – in the same organisation I receive care from – I am praised for networking, building connections and nurturing them. Log onto supervision records and I’m someone who works well with others. Log into the patient records system and it is a very different story. Suddenly I’m this clinging gremlin who needs to be shook off. Overly dependent. Must be cut off. Must not do anything to build up too much of a rapport because the dreaded “attachment” might occur.

So I don’t let myself do it. I presume I should not show any emotion or feeling when things suddenly chop and change. I wait on edge – preparing myself for when it is pulled away. If someone asks me how I feel about it I will automatically say “I’m fine, it doesn’t bother me”. I am a robot. Robots don’t have personalities. So their personalities can’t get disordered. Robots are not sentient beings, they don’t need anyone else, they don’t need attachments. I have to prove I have no attachment to any aspect of services. Because that is what people want of us. I had one clinician last year tell me “Oh I never tell “PD patients” if I’m leaving because it just causes me problems before I go.” Incredibly sorry for your inconvenience – we’re just trying to navigate this minefield!

I am the same person who goes to work, as I am the one who walks into an appointment. But suddenly what is good becomes bad and what is bad becomes good. Right becomes wrong and wrong becomes right. How am I supposed to know what is right in the world? Yes, maybe some of us do have difficulties knowing how to form appropriate attachments – but put yourself in the shoes of someone who is constantly being given conflicting messages about what is “healthy”. Is the behaviour you’re “observing” the result of a personality defect or is it simply because the person is confused and doesn’t want to get hurt and either clings or pushes away in a desperate act of self-preservation.

I hear many clinicians say “Oh its so hard to work with BPD patients, because we don’t want to run the risk of forming attachments” Replace the word “attachments” with “a healthy, trusting, reliable and working relationship” and suddenly that sentence sounds completely bizarre doesn’t it? By running the risk of creating an “attachment” you are also running the risk of providing a safe space for someone to explore themselves, nurture and grow – and ultimately fly the nest when they are ready. Because that’s how a healthy attachment starts and ends – naturally.

You are a human being. The best way to care for someone is to use your skills as a human being and not go against them.