Limitations

I grew up, like so many people my age, being told we could be anything, achieve anything if we only set our minds to it.

My parents are the result of post war baby boom. The world changed beyond recognition in their lifetime. They built me up to more than they ever imagined for themselves and they did it in good faith. They are a generation of optimists.

We, at the top end of the “millennial” generation, have come to terms with the idea we’re going to have lower social mobility than our parents. We’ve come to terms with the idea that we can enjoy avocado on toast but not ever get a mortgage.  We’re more educated but underemployed and living on temporary and zero hour contracts.

We get to do that collectively.

What I don’t get to do collectively, is come to terms with the other limitations I never expected. The limitations which no amount of work, witty think pieces, or economic change will alter.

Tonight this came, unexpectedly, into focus, when I watched a BBC 2 show called “Astronauts: Do You Have What it Takes?”

When I was a kid I wanted to either be an astronaut or a vet. My maths and biology was atrocious during my A Levels because I was a neurotic, mentalist wreck and busy taking lots of drugs so I never applied to any veterinary university programmes. But I know the route to being an astronaut can be much more circuitous, so I never really, truly let go of that dream. I’ve never pursued it, but it has lived as a pleasant daydream at the back of my head.

Cyclothymics in Space! is not a series we’re going to see anytime soon. Our unique talents don’t really tally.  What can I bring to the ISS? Moods which expand beyond self discipline, a tendency to paranoia, lingering trauma and grudges which primarily exist in the mind and not objective reality. Emotions which happen for no damn reason. Fluctuating energy levels, distrust, clouded reasoning, blurry recall, hyper sexuality.

These are antithetical to being an astronaut.

Lots of people are unsuited to being astronauts. People with physical disabilities, people with chronic physical health conditions, people with colour blindness, deaf people, blind people, claustrophobics…the list goes on and on.

But tonight it was realising I would be ruled out at the first personality and emotional evaluation test stage which made me feel utterly defeated.

We all want to be limitless. Our limits happen in different places and at different times. Sometimes it’s unexpected places we find them, places or things we didn’t even know we still had an emotional connection to (like being an astronaut) and that’s when it can really trip you up.

No mortgage, no stint on the ISS. I’ve got avocado on toast, what is the consolation prize for not being able to be an astronaut?

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Filed under media &c, self-hood and cyclothymia

The lights are off

Yesterday I couldn’t function.

This is perhaps not the most shocking of revelations. This entire blog is dedicated to the times my mood and brain knock me on my arse in one way or another.

But yesterday was awful for how absolute it was.

If I am a house – my brain is a house – with a kitchen and bathroom, living room, perhaps a study, and a couple of bedrooms, then yesterday was a power cut. Normally the house is alive, sometimes all the rooms are lit and full of noise and life, other times there are just one or two lights on. Perhaps something is slowly roasting in the oven for dinner.  There is life there.  A low hum of power and possibility, snaking through the whole building.

Yesterday was a catastrophic power cut.

Everything went off. Absolutely no sign of life from the outside and the very function of the house almost entirely wiped out. And I was just huddled in the corner of a room, waiting for power to be restored.

Today I found a camping gas stove and, whilst still huddled, have found a little light and warmth to pass the day with.

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Filed under extended metaphors, Uncategorized

Being chased down

There’s not much worse than knowing a low is coming and throwing all your energy at trying to avoid it.

At a glance, it might seem like the low itself is the worst part. But in the midst of a low, there is only the low. No real belief there was a before, very little faith there will be an after. It is, as Sylvia Plath so memorably termed it, a bell jar. Suffocating, inescapable, sealed. Not desirable, by any stretch – but it demands and enforces absolute immediacy in your relationship to it.

By contrast, the period before a low comes crashing down is marked, for me, by panic as I try and rearrange the things I want to do, and cling desperately onto the last rays of hypomania or baseline-mood. This period is increasingly characterised by me frantically trying to hang on to the good feelings; a task as hopeless as holding water in your hands. No matter how closely you grip your fingers, it’s going to run away from you eventually.

I am a control freak. I schedule my work and life carefully; I plan social stuff months in advance, I always have a to do list. My organisation in packing and filing is legendary amongst my friends and colleagues. I completed a PhD, despite cyclothymia, through relentless planning and organising. I have the past 10 years of carefully recorded personal budgets saved in Excel. I genuinely think storage solutions, year planners, week-to-view diaries, filing and planning are fun activities or items to enjoy on a quiet afternoon.

There’s a significant degree to which I struggle to accept I can’t schedule my moods, or rearrange them to suit a larger timetable. This has been exemplified in the last week or so, in which I’ve attempted to run from this mood, with varying degrees of success.

Perhaps most foolishly, every time I manage to alleviate or defer (or perhaps I should call it ‘drown out’) the low mood on the horizon, I think I’ve cracked it. Believe I’ve finally achieved just the right combination of beta blockers, cigarettes, social activities and work.  This makes the resurfacing of the low mood all the more discouraging and distressing. I become not only depressed, but angry with myself for not being able to turn back the tide. In this context, it’s not just a low mood: it’s a failure.

Living with cyclothymia is a constant tightrope; how hard should I fight and push back against my moods? How much should I accept my mood changes and aim to work around these largely unpredictable fluctuations? When I do work to manage my mood – doing things that take me away from day-to-day stresses or actively fleeing the places and people that I associate with negative moods in favour of fantastic escape – where is the line between ‘restorative, boosting well-being and net gain’ and ‘borrowing too much energy for a short term boost’? The latter being what that I find myself facing down now, with a deep ache, a sense of loss for the mood I could not cling on to and must now live without for a while.

In terms of the length of the extremes of mood, cyclothymia is fleeting. It’s getting to the point where I spend longer running from, and dreading, and pouring energy into avoiding, these moods than I do actually living through them. And that certainly isn’t living with cyclothymia, it’s fighting an unwinnable fight. I’m just not sure if I’m too stubborn, too much of a control freak, to accept I need to let go a bit to get back some sort of control.

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High Stakes Gambling

I wrote some time ago about coming across the idea that bipolar disorder[s] is an ‘allergy to stress’ and oh boy, if that’s true then the run up to a general election, whilst working 3 jobs and having no confirmed employment after August is like bathing in peanut oil/sleeping in a hay bale/other extreme exposure to common allergen.

I have been riding some fairly extreme [within the context of cyclothymia] highs and lows this past month of two. A couple of weeks ago I had one of the most glorious, free wheeling, ‘good god have you noticed how extremely attractive I am’ periods of hypomania I’ve had in literally years. In fact, it was so pure, I began to believe I wouldn’t experience its corollary.

Of course, I was wrong.

It began to float into view last week.  Like the edges of your vision darkening, or when sea mist starts to roll in and you look to the horizon and can’t quite make out where you can normally see too, but you’re sure it used to be further.

This particular low is everything the hypomania was not. Or, more accurately, the absolute inverse of everything the hypomania was. I was confident, felt sexy and sexual, energetic, funny, articulate, optimistic; now I’m defeated, heavy, pessimistic, distracted and forgetful.  Reflections, which began in conversation with a friend, on my own [experience of] gender that had seemed so intriguing and freeing, have become an internal monologue, a weight, and a source of fear.

I started smoking again. I self harmed.

It’s hard to deal with times like this. I write, often, about the ways I try and manage my cyclothymia through my lifestyle. Generally, I try to stamp down on my impulse to really let highs run unchecked and don’t indulge them by drinking and not sleeping.

But sometimes the allure is too great, the release from the everyday is so welcome, and the energy that runs through me from head to toe is just liberating.

I can’t really eat gluten without getting a lot of pain, and getting quite sick. An NHS consultant advised me to avoid it. Every now and again though, I smell fresh bread in the supermarket, or see a particularly mouthwatering-looking cake, and I think ‘fuck it, the pain is worth it’ and I gorge myself for an afternoon, or a day. As I double over in pain the next day – or sometimes just a few hours later – I usually think “I really should stop doing this, it’s not worth it”. But then the pain subsides, I stumble back out into the world and I sort of…forget.

Stress will keep coming; there will always be something to tip me over into another hard cycle. And the option to ride the wave of unsettled mood as far as it goes will keep presenting itself to me. As long as I can survive the lows, actually hang on through them to the other side, is it really the worst thing to take that pay off from time to time?

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Filed under hypomania to the rescue!, self harm

Just ‘doing it for attention’

I’ve been haunted by the accusation that I am ‘just doing [whatever] for attention’ since I first heard it levelled at people who self harmed, and then my fear deepened when a friend at school accused me of it in response to my not eating.

Fear of being thought of as ‘attention seeking’ as a teenager meant I hid every element of my unhappiness.  I was petrified that someone would discover my self harm and call me an attention seeker, so I painstakingly covered.  For a decade.  And I was afraid I would be called attention seeking for not eating, so even when the school nurse cautioned I was ‘under weight’ I didn’t say a word – and publicly laughed at such an absurd assessment.

The difficult thing is, I think, that these actions are attention seeking.  But bear with me: probably not quite in the way you’re thinking.

Teenagers, in particular, are going through unparalleled emotional, bodily, and cognitive/intellectual changes. Their social relationships are radically rearranging themselves as they re-orientate themselves around peers rather than family, their bodies are changing in very obvious ways in terms of puberty and hormones, but they are also changing into the shape that will likely determine how they experience much of their rest of their lives.  More than this, they are exploring increasingly intense and sometimes romantic relationships, and learning about the pleasure their bodies can achieve in consent with others. They are coming to terms with ideas like mortality, and able for the first time to take responsibility for assessing risks and gambling their own safety.

Looking back on who I was as a deeply unhappy 14-18 year old, I still don’t know how to fully articulate that experience, or how I could have communicated the sense of being lost in my own body, baffled by my new and changing emotions, isolated from my [seemingly] entirely-heterosexual surroundings, and the fear and exhilaration I was encountering as I began taking risks with drugs and alcohol.

What I can see when I look back, is a young woman trying to ask people around her to help.  I did want attention – I wanted someone to show me how to navigate that transition in my life, I wanted someone to tell me my feelings were as significant and life-altering as they felt, I wanted someone to validate the depth of the things I felt without calling me “dramatic” (another favourite accompaniment to ‘attention-seeking’). In a sea of other teenagers, all struggling to find themselves and each other, I wanted to be seen.  I needed attention that distinguished me from the crowd (‘bloody teenagers’) and reassured me I was valuable.

My heart aches for how isolated and lost I was at this time – how desperately I wanted someone to notice the physical actions I was taking to ask for help, and how entirely unable I was to do that verbally.  Ultimately, two parents of my friends, two of my best friends, and a girlfriend, helped me in the ways I needed.

Subconsciously, I think altering your body through self-harm and disordered eating are, ultimately, actions which some part of your mind knows will draw attention.  Faced with a total lack of language for those feelings, or the skills of reflection and introspection we develop into adulthood, how else can young people communicate their need for care, for guidance, for help, for attention?

As adults, we’re expected to move away from these actions, to develop different strategies, to recognise that harming ourselves as a cry for help is ’emotionally manipulative’.  As I understand it, one criteria which is used to identify and diagnose borderline personality disorder relates to ‘manipulative’ or ‘attention seeking’ behaviour and I know a number of people with symptoms/moods similar to mine who have been diagnosed with BPD, apparently largely because of their long term self harm. I also know many of these people have repeatedly sought psychiatric help, have repeatedly asked, calmly, clearly and with specific evidence of need and defined goals, for emotional support from the appropriate health care providers; and they have been turned away.  What can you do when expressing in words, in ‘acceptable’ ways, your need for help is unsuccessful?

I  know someone who works as a NHS Psychiatrist and is called to A&Es to assess people in crisis – usually at the point they are expressing suicidal impulses or engaging in actions of self harm.  This psychiatrist can only recommend people are admitted, but cannot create the NHS beds for them to be accommodated.  These people are also, ultimately, turned away.  They might return, ever more desperate, ever less able to communicate, ever more extreme in the physical actions they take. The chronically underfunded NHS, teetering on the point of collapse, ends up labelling these people “attention seekers”.  And, implicitly, that means ‘not in need of attention’.

Attention seekers, in an age of YouTube and Facebook and make-your-own-celebrity, who instead chose to endanger their lives and permanently alter their bodies rather than start a blog (hey-oh!) or a YouTube channel or an Instagram account? Something doesn’t add up there, does it? If this was about seeking ‘attention’ there are a hundred easier routes to it.  Self harm, suicidal gestures, and disordered eating, and a hundred other self-injurious actions are about seeking attention, but not any kind of attention.  Attention – help – for chronic, overwhelming, unmanageable experiences of fear, pain, anxiety, loss or some other catastrophic emotional state.  They are the last refuge of people who either cannot discover the words to convey their emotional state and their need for support, or who have communicated their desperate need for help and not been heard.

Why else seek attention through actions, unless because nobody is listening?

My conclusion is two-fold.

On a personal note, I remind myself of all of this as I wrangle self-harm impulses.  I don’t want to self harm, what I want right now is help with these unmanageable emotions of stress, anxiety, and fear.

More generally; that attention-seeking is not bad, or wrong, or evidence that there is not a mental health condition, an emotional need underlying it.  That we must care for, and be patient with teenagers in particular and be cautious not to dismiss their actions as dramatic or (most hated of words) ‘angst’.

People ask for help in many ways – often it is not with words because those words are either not available, or not heard.

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Filed under NHS and Professional Services, self harm

Travelling whilst Cyclothymic

I had a disappearing comment on the blog today asking for advice or thoughts on long-term travelling/backpacking whilst cyclothymic™. I think it’s something I can offer some comments on, as I do have some experience.

I try and travel regularly: living in Europe (although I don’t get to be a proper European for much longer *weep*) gives me a huge number of cheap options for getting out there and seeing the world.  My two most recent trips were one trip for 12 days backpacking through 4 cities and 2 countries, and a 3 day trip to one city. 10 years ago, before I was diagnosed, I did a massive backpacking trip around the world for a little over 6 months. It’s this experience I’m mostly drawing on here.

In my 6 months of backpacking, there were exquisite moments, but there were also truly awful times.

I vividly remember sitting on a bed in some anonymous budget hotel in Montevideo. It was early afternoon and I’d been sleeping for about 14 hours. I was looking at the window and, for the first time, I had just the most visceral understanding of why they put locks on hotel windows/don’t let you open them. I sat and I wept. Then the phone rang, I stared at it for ages, trying to imagine who could be phoning me. I eventually decided to answer, in my halting Spanish. It was a friend I’d met a few days earlier and who I was travelling through the country with. She wanted to know if I’d like to go to McDonalds. I agreed, and met her in the hotel lobby 15 minutes later.

McDonalds didn’t cure me, of course, I was depressed for a lot longer than one lonely hour sitting on a bed. But it was a reprieve from myself, and that was all I needed to get through the rest of that day.

I hate Uruguay now – and it has nothing to do with the country or the people – only my truly terrible emotional state while I was there.

That isn’t really advice.  But it is an introduction to the possibilities of travelling.  You’re away from your support networks, you might be disconnected from online support too – although that’s less common now, but when I was travelling 10 years ago Wi-Fi was not really A Thing, and I didn’t take a mobile phone with me. You’re also less accountable – how long could you fall of the face of the planet for before someone noticed, compared to when you are at home?

Here are a few things to consider if you are considering travelling and have cyclothymia:

  1. Travelling is tiring and will disrupt your sleep patterns. For any flight more than 6 hours long, you need to schedule a day off immediately following landing/arriving to dedicate to sleep/sitting around/having a very low energy day.
  2. For long term travel you need to build routines into your stops. Can you get a part time job at a place which you plan to stay at for longer? Do you want to enrol on a language course for an hour or two each morning for a month? Is there a place you can go everywhere to give you a sense of familiarity (personally, and slightly shamefully, I’ve been to either Starbucks or McDonalds in every country I’ve been to – and I’ve been to a lot of countries). When I’m starting to get hypomanic, or depressed, that carbon-copy familiarity can help ground me a bit.
  3. What are your strategies for dealing with dangerously low mood (think me, on a bed, looking longingly at a window, in a shit hotel in Uruguay)? Will you be travelling with a friend or partner; do you have an international calling bundle on your mobile; is there someone who will accept a collect call at any time of day (time zones!) and can talk you down? Have you got travel insurance with an affordable excess, on which you fully disclosed your bipolar/cyclothymia? You’ll need that to access a consultation with a GP/short term medication/review of existing medication if you are already taking it. Similarly, if you are taking psychiatric medication, you’ll probably have to get repeat scripts whilst you travel – so you may need a psychiatrist’s letter, and to confirm your particular medication is available in the countries you are travelling to.
  4. Sleep! Sleep is so important to maintaining my mental health and sleeping in hostel dorms is pretty much the opposite of achieving good, quality sleep [case in point; my experience in Singapore is number 4 on this Buzzfeed list of strange-shit-that-happens-in-hostels]. It can be a good idea to both budget for and schedule time in private rooms or hotels. 2-3 nights uninterrupted sleep, especially if you have an en-suite and a TV so you can just hole up for a few days and reset, is about the best thing you can do to take care of yourself. I did this a few times whilst travelling and it was money well spent every single time. My more recent short-term travel is something I still plan around having one to two days recovery time when I get home.
  5. What are the hardest things for you about being either hypomanic or depressed? For me, it’s the nervous/anxious habits and fixations. I cannot cope with ‘dirt’ – real or imagined. Hygiene standards whilst backpacking can be pretty variable. Your fellow backpackers may have some fairly singular ideas about what constitutes appropriate bathroom etiquette, and don’t even get me started on kitchens. What strategies are you going to have to deal with that? If you don’t have funds to decamp to a mid to high range hotel at the first sign of trouble, you’re going to need to be more creative. I carried a thin blanket, and a few items of cutlery which I resorted to when I stopped trusting the cleanliness of bedding and self-catering facilities (I’m in a low mood period right now, and just thinking about using unfamiliar cutlery is making that dragon of anxiety rear up in my chest). I also, on my long trip, travelled with my-then-partner and she did sometimes take up the job of scoping out the cleanest bathroom or pre-washing cooking material. It helped that she tended toward obsessive cleaning in this respect and appreciated terror at ‘dirty’ things.
  6. Travel can be lonely. Don’t think for a minute that taking a laptop or tablet and staying up to date on social media is going to be a substitute for hanging out all evening with your oldest friend and putting the world to rights. There can also be a real pressure to be seen to be having a good time whilst travelling. I found it really hard to update friends (with whom I would normally discuss my mood) that I was experiencing depression whilst I was travelling. Because who could be unhappy whilst on a picture-perfect Brazilian beach, right? A good old fashioned paper journal where you honestly record how you’re feeling can help ‘get it out’ (I still have mine – it records the highs and the lows from my trip and I’m glad I have the honest account of it, as well as the edited snapshots of me smiling on beaches and in rainforests) You might also try and schedule regular Skype dates with close friends where you give yourself enough time, and privacy, to actually talk properly about your feelings. Finally, you might want to travel with a friend, or arrange to travel with other backpackers you meet for short (or long!) periods.

I can’t stress enough that making the decision to travel is not all about planning against the worst. From a cyclothymia point of view, I think there are a lot of positives to long-term travel.

Travel is good.  Personally, when cyclothymia gets oppressive or I start cycling too fast, a change of immediate surroundings helps ease that sense of crushing weight or inescapable thoughts. Travelling – especially backpacking – is about doing just that; being able to pick up and run.

I also find it really hard to be mad around people – when I’m feeling particularly mentalist and maybe having ‘strange’ reactions where I talk too much, or get distressed by certain noises, smells, or just get caught talking to myself – I’m mortified to have to see the people who witnessed it, again. The advantage of travelling is that when you’ve made a ‘bad’ [read: they’ve all clocked me as a mentalist] impression, you can just move on to your next stop and never see those people again. Problem solved!

Someone said to me, before I travelled, that your worst day travelling is still better than your best day at home.  I don’t know if I’d make quite such an extreme claim, but I do think it’s easier to keep your mood moving on when you are in the midst of a lot more activities, a lot more options, and a lot less rigid routines. Yes, you need to make choices and maybe put in place a few more protections/insurances than your ‘standard’ backpacker, but if you’re doing that in your daily life anyway, it’s not a particularly onerous task and has much bigger rewards.

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Well being and wank

I have an ambivalent relationship to the concept of ‘wellbeing’ and the connected advice and recommendations that go along. On the one hand, I recognise there are some compelling results from scientific studies that support the suggestion that taking time to engage in mindfulness exercises, or sport, or creative hobbies can have a significant impact on the maintenance of good mental health. On the other hand, I hear ‘mindfulness’ and I shut down, the working class chip on my shoulder grows so heavy it topples me over, and I snort at the suggestion I stop working and do that ‘pile of wank’.

The idea of taking time for yourself in order to ‘nurture’ yourself (I can’t even write that without scare quotes, this is how deep it goes!) and place your emotional, intangible needs above, say, doing some hard work, is one I am ill at ease with.  I’ve blamed this reluctance to acknowledge there may be something useful in all this “new age, wishy washy, hippy nonsense” on my working class upbringing. But perhaps that’s not all there is too it.

On the one hand, I come from a family who – rightly – value hard work. I was brought up to believe that you will find pride in yourself and your life if you work hard, and believe in what you’re doing. It’s an idea that’s guided me well, these 32 years.  I’ve pushed on and always sought out something to work on, and work for, in my life. It has rewarded me with pride in my accomplishments, and a sense of purpose in a range of different jobs – regardless of how they are regarded by others.

The trouble is, this isn’t enough.  You also need a sense of yourself which expands beyond your work, and which can’t be utterly destroyed if you fail, or lose your job, or can’t pull off the task you set yourself this time. It’s also not enough if working is the thing that’s made you exhausted and low.

Perhaps this is why it’s so hard for me to talk about my mental health, and my ‘wellbeing’.

Right now I’m on fixed term contracts, working two jobs, and staring down the barrel of unemployment/uncertain employment in September. I’m also riding out a low.  After a farcically bad Friday where I tried to socialise with friends and colleagues, and only succeeded in making a lot of people worry about me, I found I needed to confront ‘wellbeing’.

Friday night’s disaster was predictable. I’ve worked flat out for 10 weeks without a break – yes, I’ve even been working weekends. I was exhausted. What I needed on Friday was not socialising, it was time. I needed time before I put on my ‘nice’ clothes (somewhere in the classification of clothes above ‘clean’ but below ‘wedding guest’) and headed out the door.  I needed time before I had a rushed dinner and sent a message to say I was on my way to the pub. I needed time before I confirmed the time and place and invited more people to join us.  And yet I still did all those things. Still pushed forward and pushed myself to do the thing I knew I didn’t want to, and perhaps couldn’t. Because I most often view socialising as another job. Something you do almost mechanically, by numbers. And when I ‘tick off’ whatever it is, I trust I’ll get the reward of pride, or personal value, or wellbeing.

But cyclothymia doesn’t work like that.

On Friday night I couldn’t speak. And everything everyone said hurt. Being there didn’t work. Working hard at going through the motions, didn’t work.

Saturday, I slept. Then I walked. For three hours I walked. And on Sunday I slept. And then I swam. I need to do that more this week, I can feel that already. I need to not work – both ‘traditional’ work and my self-designated social-stuff work. This is wellbeing.  Getting head space, disconnecting from the internet, from friends, from work, from responsibilities and deadlines, and from pressures and insecurities of life. Taking time to feel my body do good things, taking time to notice spring exploding from the gardens and parks, taking time to feel something outside of my mind.

I need that space, the time, the not working. But I’m afraid to take it and admit I need it. Because if that works – if not working works – then where does my self-worth come from? Because if I can be emotionally ‘rewarded’ by not working, then will that make the value of work less? And if I lose that route to value, will I ever be able to find a way to gain a sense of worth again?

Wellbeing is, then, a terrifying spin of the wheel for me. A fear that gaining anything positive from not working will be cancelled out by undermining the positive things I gain from half-killing myself to work and socialise. I wish I could say that realising this has revolutionised my relationship to taking time for self-care activities like walking, exercising, and spending time in nature, but it hasn’t. Next week I’ll start working on articles and funding bids and job applications again. And I’ll likely reassure myself that this is the best place to get my sense of worth from, and Saturday’s long walk was just a blip, a one-off alternative.

Besides, I’m cured/never needed self-care/just got lazy.

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Coming Out

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Recently there has been an explosion of profile pictures appearing on my feed – all of them friends of friends so far – which use some combination of these ‘badges’.  They seem to resemble rather low-stakes bingo cards.  Personally, I’m pretty sceptical about how far posting a list of diagnoses on facebook does anything to ‘end stigma’.

There is something of a pervasive idea that saying “I have this thing” will cause stigma around mental ill health – and more specifically the behaviours and symptoms associated with mental ill health – to evaporate.

These mental health bingo cards seem to aim to show how ‘normal’ or ‘just like you’ people with mental health issues are; ‘surprise! we’re hiding in plain sight’.  But why should we have to make this argument or disclosure? Why should that huge responsibility fall to any of us as individuals? Indeed, will it do anything to change how these conditions and their symptoms are viewed in general? I think this tactic might be a backwards way of thinking about stigma.

Some time ago now, I wrote about what I think are good questions to ask yourself if you are deciding whether to disclose your mental health problems. That was focused on how coming out can produce identifiable, specific changes in your professional life or friendships.  The idea that ‘coming out’ to all of your facebook friends (and their friends) will alter the overall perception of mental ill health is, by contrast, a vague and massive aim.  Without context, without further information, how much can a list of conditions, some of them rare or relatively unknown, alter perceptions?

Let me put it another way: my brother has schizophrenia.  He has been sectioned numerous times, has been very unwell and exhibited all the classic symptoms including psychosis – with its delusions, hallucinations and disordered thinking and speech.  He was and has been immediately and unequivocally altered and recognisably mad.

I understand what schizophrenia means. I understand that my brother would never harm me or anyone else and I know the stats on people with mental health illnesses being more likely to be victims of violent crime than perpetrators. I know that the causes of schizophrenia are genetic and environmental.  I know my brother’s schizophrenia was hastened by use of illegal drugs.  I know his brain has been irrevocably altered by the severity of his illness.

Given all of the above, I’d class myself as not holding any particular stigma or fear of people with schizophrenia.  But I’m not any more enthusiastic to go and speak with the mad person on the bus who is talking to invisible friends or foe.  I’m not going to sit next to the person who looks terrified or angry or manic on the train. I’m not going to enjoy spending time with anyone, including my brother, who is in the grips of schizophrenia.

Knowledge of the normalness, of the ‘just like me’ nature of people who have schizophrenia does not lessen my disinclination to get up close and personal with some erratic, occasionally frightening, and often confusing behaviours.  Stigma around mental ill health is about more than knowing, it’s about something much deeper, and perhaps something which cannot actually be ‘defeated’ or ‘ended’.

Rather than trying to kick start some sort of ‘mad-pride’, isn’t it better to target misinformation about mental ill health (depression isn’t laziness, anxiety isn’t being too coddled, schizophrenia doesn’t make a murderer, etc etc) and encourage people to understand mental illness in the context of wider physical health?  ‘Stigma’ is amorphous and complex and to do with a lot more than lack of knowledge.  It relates to distaste, social norms of behaviour, comfort, the ability to actually have an inter-personal relationships.

From knowledge though, we might move towards compassion, empathy.  Even if that empathy can’t and won’t translate into spontaneous interactions with the person raving at the invisible people on the street corner, it will make things better in other ways.  It will allow people space, and perhaps alert people to the need for properly funded and resourced mental health services. It will help people realise that symptoms are just that – symptoms of an illness which can be managed or controlled.  Symptoms – source of stigma – are not the people – the ones cheerfully shouting ‘bingo!’ on facebook this week.

Most importantly, the work to address misinformation on mental illnesses can be done by anyone. Anyone can share links to websites like Mind and the NHS.  Anyone can look up information on these conditions and advocate for better understanding. It takes the weight of responsibility off us to turn ourselves into one-man-ambassadors and asks everyone to join together to better understand a range of illnesses facing many, many people.

We are not our illnesses.  Listing all of the diagnoses we have won’t change how people feel about the expression of the symptoms of those illnesses.  Explaining what those illnesses mean, can help change how people connected to those symptoms are understood.  But it won’t change more general, gut reactions to visual and social signs of mental ill health any more than a badge saying you have had food poisoning would make people feel warmer about vomiting and diarrhea.

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January 8, 2017 · 9:18 pm

Unwelcome noise

It’s been some time since I last blogged, happily this is largely because I have had a fairly stable period. Inevitably though, this has to end.

Over the last two months my moods have been – and I apologise for cliché – a rollercoaster.

I’m currently taking a break from Twitter as it seemed to have become primarily a platform for miscommunication rather than positive communication and networking. Initially I placed blame for this outside of myself – why did everyone assume I was being shady? Why did everyone jump to the worst conclusion? As always though, I endeavour to look inside myself with the same cynicism I regard others with and, perhaps inevitably, I found failings there too.

I realised the number one issue with twitter was that, as my mood plummeted and I communicated this, my friends and followers weren’t able to offer me what I wanted: a cure. People weren’t reading imaginary hostility in my tweets; I waa angry with them, with everyone.

I tweet with reasonable frequency about my mood – primarily because when it’s bad it’s the only thing I can think about. For this reason I suspect my followers are rather tired of hearing how wretched I feel – and as an aside, this really underlines how imperfect language is for expressing emotion. Whilst it looks boringly repetitive to anyone reading, each low has its own distinct flavour and texture. From the inside, it’s always new, always different, and frequently unexpected. Perhaps, then, it’s natural people have little left to say when I once again bemoan my low mood.

But I need something, and find myself desperately scrambling for a solution, a balm, a shortcut to lifting the cloud and moving on.

Which leads me to getting angry with my Twitter followers for not offering the cure I become inexplicably certain they are withholding. All these people seem to know how to be happy, to know how not to be alone, to know how to live – why won’t they share their secret? Why won’t they, in 140 characters, do what medication and psychiatrists couldn’t, and save me from myself?

And round and round my mind goes. Refreshing my mentions every few minutes, increasingly furious that nobody is proffering the solution. Increasingly paranoid, increasingly frantic.

So I stepped in my own way and took twitter out of the picture – you can’t be furious nobody is replying to a tweet you didn’t send, right?

Well, perhaps inevitably given we’re dealing with illogical thought patterns and, as of two days ago, that horrible anxious kind of hypomania, yes, you can still be angry. Why haven’t these people, whom I have unfairly decided have The Answer, not come to find me elsewhere online? Doesn’t that just prove I was unwelcome noise on twitter? Why do I have to do this alone? What did I do wrong? Why won’t anyone tell me how to fix myself?

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Stress Intolerance

A few months ago I saw an ad in the local hospital for a bipolar support group.  It said “having bipolar is like being allergic to stress”.  That’s about the most accurate description I’ve seen, I think.

I haven’t posted much on here in the last few months because I have been finishing up my doctoral thesis, then I took a holiday (my first in 5 years) and now I’m working on job applications.  It has been, in every sense, an exceptionally stressful few months.

It is perhaps curious, then, that it is only in the last week, a month and a half after I submitted my thesis, a month since I got back from a lovely holiday, and a week after I got a job application in, that the crushing anxiety, panic and low mood has really set in.

Whilst bipolar is an ‘allergy’ to stress, the reaction is often delayed and it can be hard to deal with that.  Immediately after submitting my thesis I braced myself for a downswing, cleared my diary and prepared to meltdown.  But it didn’t come. ‘Perhaps it’s not going to!’ I thought. ‘I’ll just get on with preparing for my holiday!’.  In the first couple of days of my holiday, whilst I was in Zagreb, I began to feel the black edging into the edges of my thinking – ‘ah! here it is! Best take myself off somewhere quiet to mope’.  But again, it never really came through – I travelled south in Croatia to Split and the sun was out and my troubles seemed to lift. ‘Maybe I really am cured!’ I thought.  ‘Perhaps the secret cure for cyclothymia is writing 80,000 words followed by sunshine!’

There was a nagging sense, deep inside me, that all that was happening was that the holiday was delaying the inevitable.  That low, that allergic reaction, was just waiting for me, biding it’s time.

Buoyed along by a busy schedule and post-holiday glow (literal and metaphorical, managed to get a lovely tan in 7 days in the sun), the week following my holiday was pretty solid.  But, little by little, I began to slow down. Waking later, sleeping longer, heating up meals from the freezer instead of creating culinary masterpieces from scratch.  It was coming.  Having terrible dreams, waking up sweating and gasping for breath.  The first signs of the inevitable reaction – the mental health equivalent of itchy skin, fuzzy tongue, sneezing.

And so, we come to today. Woke up, after another night of terrible dreams. barely able to walk in a straight line (anyone else experience low swing as significant impairment in physical-coordination?) Ate breakfast.  Fell asleep again for 2 hours.  Stumbled about for a few hours, tried to boost mood with music, ended up crying to Vivaldi, of all things.  Tried to work – read the same sentence of an article 4 times in a row before giving up.  Tried to sew – took me three times as long as normal to do a small section, abandoned. Considered visiting family, decided it wasn’t worth risk of an argument. Digestive system, which has been merrily melting down in response to stress since May, reaching it’s peak in pain.

Do I feel stressed? No. Do I have any urgent jobs, bills, or commitments? No. The peak stress is gone.  There are, of course, still various tasks and events on the horizon which will be challenging and likely stressful, but nothing in the immediate future. This is cyclothymia.  This is what stress does.  It goes in, gets absorbed, and then, when there’s nothing pressing, when there is time, it’s released throughout your mind and body, disrupting all the vital systems, leaving you on your knees amidst apparent calm.

I’m falling to pieces in a house well stocked with food, bills paid, jobs done.  I’m struggling to sleep in a large bed when I don’t have an alarm set for the morning and I couldn’t tell you the name of the thing that is worrying me half to death.

For people with bipolar spectrum conditions, stress is so like an allergen.  It’s a constant presence in life, ebbing and flowing with the season and the location. And it is almost impossible to protect yourself from – it sneaks into your world, leaking through the cracks in whatever plans you make or precautions you take.

Right now, it feels like the UK is in meltdown.  As the government and new Prime Minister push ahead on the disastrous Brexit plan, the main opposition party is in disarray and entirely incapable of coordinating a strenuous response to the inevitable public funding cuts, Brexit, and the terrifying rise in hate crime and hate speech.  This is stressful.  And, along with the undefined worries which already plague me, I can feel my mind absorbing it all, quietly storing it away, ready to top up my anxiety at any moment.

Sometimes it feels like cyclothymia disqualifies you from living in the world at all.

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