Collapse

by sequinnedmannequin

I had a bit of a meltdown today. (Sorry, this is going to be one of those serious posts again.) In the interests of making explicit a couple of things that I have referenced before but never properly explained – and which are relevant to today’s blog – I have two chronic health problems that will never go away, one mental and one physical. Sometimes the symptoms are better than others, learning to manage these conditions limits their impact on my life, and the mental health problem can have periods of remission in which I barely know it’s there (or so I am told…). Nonetheless, even when asymptomatic, I will never be ‘cured’. In general I try not to let these things define my identity – although of course they define my life in many ways because they affect my ability to carry out a ‘normal’ existence – or place too much emphasis on them because there’s no point creating a drama about it. These things are part of me, part of the way I live, and – at least in the case of my mental health – I have no frame of reference for it being any other way. I have no memory of a time in which I did not feel that my brain was being crushed under the weight of something that it could not resist and feel terrifyingly powerless to my emotional life. At this point I cannot extrapolate what parts of my thought and behaviour are due to my ‘illness’ and what are just part of me – and, really, when you think about it, chronic illness is not a separate thing that intrudes upon a person, it becomes a fundamental part of who they are. The diagnostic criteria for illnesses are created based on the symptoms people display, and people with similar symptoms that fall into a particular bracket are described as having this or that disease or disorder and therefore this externally imposed diagnosis breeds a kind of feeling that the disorder is therefore almost a separate part of the patient, some little demon to be exorcised. Of course it’s true that most conditions can be ‘treated’ in some way to make the sufferer more ‘normal’, but I don’t find it helpful, personally, to focus too closely on which aspects of my personality or identity are the ‘sick’ bits and which are the ‘healthy’ bits, or to try and separate them out, or to assume that all of my behaviours are the result of my diagnosed conditions.

Already I have detracted from my point quite considerably but mainly I’m saying, I suppose, that I try not to let any of my health issues – or in fact any parts of Who I Am (although while I have an ego this is clearly going to be impossible) – become defining aspects of my identity. I am highly suspicious of anyone who carts aspects of themselves around like they’re their cross to bear, or parades aspects like a victory flag. I do of course understand that when discovering new parts of our identities it is natural to foreground these and assert ourselves upon them, claim the territory as it were and declare ownership of this unfamiliar side that gives us a fresh kinship with a new set of people based on a similarity previously unacknowledged. This is why teenagers are, in general, so fiercely devoted to whatever things they happen to be devoted to, and why they display such strong visual cues as to their tribal allegiances – this is when we start properly trying on identities, discovering what is costume and what is part of our essential make-up, and when we begin to hollow out our little place in the world. I think self-discovery is a lot about first discovering other people who are similar, and using the confidence provided by acceptance as a launching device to go and find our own world. The people I admire most are the ones who have gone through this process and understood who they are, and that who they are is not a stable entity, and who have integrated all these externally imposed categories into their identity – as perceived by them and others – and their internal reality (as distinct from external categories because, for example, being part of the category ‘woman’ is different to simply happening to either be biologically a woman or identifying as a woman – and to integrate these things there must be a negotiation and reconciliation of the objective notion of ‘woman’ with the subjective experience of being a woman). It seems to me that people who have managed this successfully do not need to hold on to the external categories as validators of their self; they know who their self is and their self is not a Woman – it is more than just a Woman and yet it is intrinsically and unavoidably a woman (I don’t mean biologically) to the very core of their being and so perfectly so that it could never be questioned. People who just are what they are without feeling the need to ram it down anyone’s throats all the time (to clarify, I don’t mean people who are open about themselves – that would be highly hypocritical of me! – but those who seem to be on some kind of crusade or live the rest of themselves through the lens of one dominant aspect), people who are simply what they are from the inside and acknowledge how this is mapped by those on the outside, as opposed to looking at themselves through the eyes of the outside and constructing themselves in relation to this, generally seem more secure, happier, less judgemental… all things I would like to be.

I’m still digressing significantly. Sorry. But I had this epiphany recently that has helped me come to terms with who I am and how I need to approach the world. I have always felt like an outsider. So nothing new there then, I’m sure everyone feels like that really. I feel like this person who is a bit odd, very intense, never quite fits in anywhere completely but is a jigsaw piece with three compatible sides in many places (all fine as long as no-one tries to come and take the space next to me, but of course this means there’s always a gap…). I feel that there is an otherness, that others pick up on this and it freaks them out, and I don’t know what it is or how to make it not be there – or even whether I can – but my life has been marked by a profound feeling (and the feeling of it is what’s important really, even if it’s not ‘true’) of difference and disconnection. Whatever I have tried to do to ‘fit in’ has failed to work – which is not to say that I’m completely alienated, or that ‘no-one understands me’, or that I don’t have friends, or that I’ve never felt connected or accepted, just to say that I perceive a certain wariness from the world at large, as if I am some kind of alien or uncanny object or strange anachronism. (So this is my identity trip I guess; this is my self-defining through external perceptions… I’m not so naive as not to have noted my exemplification of the basic tenet of projection: the things we most hate in ourselves are ascribed instead to others.) So anyway, about a year ago I was thinking about this feeling of not having a place, of being alone, of being isolated, and I realised that in some pockets of my life – at least on my better days – I felt properly loved, properly accepted. And I realised that those places were the ones where I didn’t try to find a place within them, I just was there and was me and didn’t pay too much heed to whether I was liked or popular or anything, so therefore I didn’t get anxious about it, so therefore I was nicer and more fun and more relaxed and people were more readily accepting of me. I didn’t feel less other, but I felt like my otherness was a part of me taken along with all the other parts, and therefore it didn’t cause me trouble. At about the same time this phrase came to me:

It’s not about finding a place; it’s about making a place.

I realised that I had been trying to find a place to belong, a place to set up home, and I was becoming increasingly frustrated that whatever I tried it only seemed to make me feel more disconnected. Mostly I tried finding that place in other people – close friends when I was younger and romantic relationships when I was older. I made them my receptacle. Never a good idea. But also in workplaces, at university, in groups of friends, in physical locations, on the internet. I tried everywhere, but nowhere fit. Three sides of the jigsaw piece at best, so I could kid myself sometimes that I’d really found a place… until the lacuna gasped at me louder and louder, or until some other jigsaw piece came and tried to nestle in next to me just to prove that I didn’t fit. What a revelation! Don’t FIND a place – MAKE a place! If the jigsaw of the world does not have a space the size and shape of you, be your own jigsaw. Essentially it was a lesson in being alone. In not fighting being alone, or trying to pretend it’s any other way, but accepting my aloneness and then taking my alone to other people and places and making a place there, however temporary. My aloneness was always searching for a place because it wanted not to be alone and it would squash itself into gaps the wrong shape to distract itself from loneliness. Crushing itself into ill-fitting spaces, suffocated by proximity, it felt more lonely than ever the way that wearing someone else’s wrong-size clothes can make you feel more naked than if you had nothing on at all.

Since realising this – partly due to having already been partially successful – I have tried to nurture my alone self and my own place. I am making my place, and that place is inside me. There is no other place I need to find. If my place is my me then I take it wherever I go, I bring it to each unfamiliar situation and each old friend and each everything. I’m not always succeeding, but life is about the attempt and the learning and the small victories along the way not the completed completeness. I like it. I am making a place. Metaphorically building a house. Somewhere to keep all my shit so it doesn’t spill out on the pavement where other people have to deal with it. I know that part of this making a place is about making a place to keep myself safe and not carelessly throwing myself at every place I see in case I fit. I am not doing so well with stopping the pebble-dash catch-all uniform approach to trust – a technique that I largely employ, I think, because I am lazy – but I am trying. Even this is such progress for me, and in such a short space of time compared to how long I’ve felt utterly fucking desperate and hopeless that I was ever going to find any belonging or any confidence not to need it. I can put the transformation down to four things: medication, routine, a steady and large enough income, and being made completely psychologically alone by my mum moving to Canada.

In a very roundabout way indeed I guess this brings me sort of back to where I started. As usual I’ve been writing this for almost two hours, am tired, and haven’t written about anything that I actually intended to when I first sat down. Sigh. As I was saying, I have two health conditions that I try not to let define me. Physically, I have this thing called Hypermobility Syndrome. In its asymptomatic form it’s what’s known as double-jointedness and is called Benign Joint Hypermobility. Essentially it means my joints over-extend and are very unstable due to a collagen disorder that loosens the connective tissues. In case anyone knows what I’m talking about, I score 7/9 on the Beighton Criteria (only joints unaffected are the knees, although strangely I have more pain in them than any other area except my shoulder). When the hypermobility causes pain it becomes a syndrome. In my case I have considerable instability in my right shoulder, which partially subluxes pretty much whenever it feels like it, and due to sitting at a desk all day I now have pain in it almost constantly. This radiates down my arm and also causes numbness, tingling, and muscle pain from where the muscles are working to keep the ball in its socket. Around now, the week before my period, everything gets a lot more painful as the female hormones produced at this time relax the tissues even more, so areas that usually only hurt if it’s cold or if I sleep on something that isn’t a foam mattress – my hips, mainly, and my lower back – all start popping and creaking and objecting like nobody’s business. Sitting in a chair at a desk using a computer all day is pretty much the worst thing I could be doing.

So why the meltdown? Well, several reasons. Firstly, being in pain all day is no fun. It gets boring quite fast. Sometimes I have a little cry at my desk because there is nothing I can do to stop it, and once the numbness – which is actually my least favourite of the sensations, even worse than the pain – once the numbness sets in I can’t get my arm back again. If you’ve ever had Carpal Tunnel Syndrome, it’s basically that, and my wrists are getting worse from the typing. Then my muscles won’t relax themselves, even when I get home and lie down my arm won’t relax, the pain won’t go away. So I spend my whole working day in pain and come home too exhausted to do anything and still in discomfort which lasts until I go to bed. I try to sleep, but I don’t sleep well at the best of times and it’s hard when there’s no comfortable position for my body, so I wake up the next day more tired… cycle continues.

Then we have to take into account work itself, which is stressing me out inordinately at the moment because there’s so much to do. I’ve been looking for another job, something part-time so that my brain doesn’t explode trying to squish the MA and the job into a working week, and was thinking of asking my boss again how he might feel about a job share if I changed my proposal from four days a week to three. I can’t really afford to live on less than four days’ wages, but I was hoping that if I was on a low income I would be eligible for some housing benefit to make up some of the difference. Today I discovered, however, that the housing benefit regulations changed at the start of this year. Now, you are assessed on shared house rent of £85 per week if you are under 35. It used to be under 25 and I was stiffed by that rule when I lived in Brighton and earned practically nothing. In what universe you can get a room in a shared house in London for £85 per week I don’t know, but anyway it fucks me over because my rent is more than that and rather than assessing whether you can afford your actual rent but only giving you £85 towards it, they just assess whether you can afford to pay £85 per week, which I probably would be able to on the wages I anticipate getting for three days’ work. I looked at every combination of benefits using the benefit calculator and put in three different scenarios – my current situation, working part-time, and not working at all due to incapacity. In my current situation I am entitled to nothing. If I was earning £14,000 per year gross (so around £10,500 once tax and NI are taken off) I would be entitled to £10 per week housing benefit, and if I was unemployed due to incapacity I would be eligible for £85 housing, £65 living, and £15 council tax. The difference between my actual rent and the housing benefit isn’t even covered by the living benefit. I don’t understand what people are supposed to do.

I don’t understand what I’m supposed to do. My current situation, working full-time and doing the MA, is having a detrimental effect on my physical and mental (I’ll get to that in a minute) health and is untenable. I am fairly sure I’m heading for some kind of something that isn’t good if I keep pushing myself as hard as I am at work work and doing the MA alongside it. Finding jobs for four days per week is really hard. It’s just not a very common contract. I can’t afford to live on anything less without help. I could give up my MA, but then I have to deal with the psychological burden of just doing my job that I’m overly invested in but doesn’t give me any satisfaction on a personal, emotional, spiritual, creative level, and isn’t furthering my prospects in any way. I’m not doing the MA frivolously just because I feel like having the qualification – as much as anything it’s a route to a PhD, a route into a potential career (not an especially realistic one, I grant you, but someone has to teach all these students and write books and things… academic jobs are rarer than hens’ teeth, but from what I gather all jobs seem to be pretty scarce these days so unless my aspiration is to work in a bar or do some admin I’m not sure what would be a surer bet?). I’m stymied now. When I realised today that I am actually unable to work part-time unless I by luck happen upon a 0.8 contract and am given the position I completely panicked.

To briefly backtrack and address the mental health thing. I have, for as long as I can remember, but definitely since I was 10, had mood problems. I first went to a doctor when I was 15 and realised that it wasn’t normal to wake up every day sincerely wanting to die. I gave him some symptoms, he gave me some SSRIs (which I didn’t take), and in the space of five minutes pronounced me as having depression and told me to get pill-popping. I had periods of improvement over the next few years, but nothing lasting or significant, then some periods of utter hell, during one of which I went back to a doctor again to see about trying medication. I told them about my previous diagnosis, seven years earlier, and with no further questioning I was furnished with a new batch of SSRIs. I tried two different kinds, both of which made me feel like a zombie, and then moved back to London and had to start the process all over again. London’s medical people, in general, are much more thorough than the country bumpkins, I have to say. To cut a long story short, after being batted about from my Community Mental Health Team to the Maudsley to my GP to CMHT to Psychiatrists and Psychotherapists and the like, a ‘line of best fit’ diagnosis of Bipolar Disorder was reached. It was sort of a toss-up between that and Borderline Personality Disorder, but according to the internet there are a lot of people who think BPD isn’t a separate category but a place on the bipolar spectrum so that would make sense I suppose.

As with all things medical I am wary of placing too much importance on a diagnosis because, well, it’s basically just some categories some people made up. Based on observation of course, but it’s not like they’re hard-and-fast. Every time they bring out a new version of the DSM disorders get removed or added or their sub-disorders change or the diagnostic criteria change. When DSM-V is published I might not even ‘qualify’ to be bipolar any more. BPD most likely won’t exist – or it will be called something else. Medicine is a funny old thing. Thus I try and say I’m bipolar loosely, remembering always that I was put in this category just because more of my symptoms belonged in it than anywhere else, but that the category is only a tool for helping me and others understand the nature of my experience, and a tool to help doctors work out what treatments might help based on other people who have had similar experiences. I do think it’s helpful to have a name to put to things, to both describe and legitimise, to provide a frame of reference, to give specificity to something nebulous. My mother is hugely skeptical of all things medical, especially any kind of illness with a name, and as far as I can tell doesn’t think they really exist. In one way I understand, because they don’t ‘exist’ other than being a set of symptoms that have been grouped together and given a name but that’s not to say the symptoms don’t exist. We did have a slightly annoying conversation the other day in which she expressed surprise at my emotional instability because I don’t have any challenging aspects to my moon in my natal chart (!). Now whilst I am similarly wary of the medical profession and have a penchant for astrology I think this might be taking things a little far. But this is just an area we can’t really talk about; she plays a strange game of one-up-man-ship whereby anything I’ve experienced she’s had worse and therefore it somehow negates my version so I’m not allowed to talk about it any more for fear of being made out as a drama queen. The more I think about it, the more I realise that she’s actually very unsupportive of certain aspects of my life… if I ever refer to the fact that I’m bipolar I can feel her internally rolling her eyes, declaring me a hypochondriac. I think she just doesn’t believe in it – possibly not at all, definitely in my case.

Anyway, anyway, big digression time again. Must get the rest of this out of the way so I can bloody well go to bed. So I have a mental health condition that is ish under control with medication and is aided by being employed and having routine and working on my future prospects but made considerably worse by being tired, being stressed out, feeling squeezed, and at the moment I am all three. Poor physical health obviously also has a significant psychological impact so the added tiredness and stress from the joint and muscle pain is contributing to my overall mental state, which right now is quite fragile. I know it’s not the way our benefits system is set up, and I know the current fucking government is doing all it can to run the already inadequate framework into the ground but I just can’t quite believe that there’s nothing to help people in my position. People who have long-term health problems that qualify as disabilities but who are not incapacitated and have an active desire to work but can’t work a full working week and can’t afford to live on part-time wages. The stupid thing is that if there was such a benefit the tax on the wages would pay for the benefit that made up the deficit – people would be paying for themselves! That has to be preferable to not working at all and claiming the full repertoire of benefits or people forcing themselves to work full-time but running their health into the ground. Assuming, as one has to with the Tories’ policies, that the government don’t actually give a crap whether the citizens of this country are happy and healthy or at least not utterly fucking miserable and at risk of their legs falling off and only care about money, it still isn’t cost-effective to have someone with a health disability working for 10 or however many years until they collapse in a heap and require hospitalisation, or specialist care, or full benefits, or long-term sick pay. The cost of topping up surely must be less, taking into account the tax on the hours that are worked, and the long-term benefits so much better for everyone. It’s just so frustrating and it makes me so angry. For the first time today I really felt disabled – in the sense of the word as it was first used, to reflect the fact that disabled people are disabled by the way the world around them is set up rather than being unable per se. My options are to not work and claim benefits but still run at a loss or to compromise my physical and mental health by continuing to work full-time. Bullshit. Obviously I will continue to look for part-time positions and see what I can get but today I feel so hopeless and disempowered, for myself and for all the other people being screwed over by the welfare reform or who were already screwed over by the way the benefits system works. I don’t WANT to claim benefits, I’m not in the business of taking everything I can get, I just want to be able to work, to draw a pay cheque, to contribute my taxes, but not to have to sacrifice my health in order to both do that and keep my head above water financially.

If one more person suggests stopping the MA I will scream. What would be the point in that? Mentally I would just transfer the stress from having the MA work to do to having a life crisis about not moving towards my future goals. Physically my shoulder and other joints would be just as bad from still sitting at that desk for five days a week. It would achieve nothing. Perhaps on one level it would make my life a bit easier, less external pressure, but what would I even be living for?