Tag Archives: bipolar

The Not So Secret Life of the Manic Depressive

On Monday of this week, 15th February, BBC showed a documentary [still available to watch on iPlayer if you are in the UK]  following up on Stephen Fry’s landmark documentary on living with bipolar disorder, The Secret Life of the Manic Depressive, which was shown 10 years ago.  I remember watching that documentary vividly.  So much of what I heard and saw from the contributors resonated with me – I didn’t have a diagnosis of cyclothymia then, but I did have suspicions.

This blog is part live blog, part reflection on the show. In bold is the key event/moment in the show, the rest of the paragraph is my commentary which I hope will be intelligible even if you have not watched the programme.

Stephen Fry, post suicide attempt, decides to see psychiatrist – and then he sees one!  This is evidence of a BIG difference between private healthcare and dealing with the NHS. And he tells us he was immediately admitted to hospital. Again, wildly different than experience of NHS – with the enormous and unending cuts to NHS mental health services there are no beds. And in most cases there is no possibility of hospitalisation without a section – and a good deal reliable rumours suggest doctors are avoiding sectioning people who need it because they simply have nowhere to place them.  Stephen Fry’s experience is (absurdly given how essential mental health treatment is) one heavily inflected by his economic privilege.

Kids in the school talking about how “bipolar” is used as an insult really drill to the heart of living with bipolar spectrum disorder.  People do not like it.  It’s not charming, it’s not represented as ‘useful’ (however inaccurate that is) and featured in a regular show, it’s not cool.  It’s also something I reflect on a lot in terms of disclosing my mental health issues – I am always conscious that once people know my diagnosis they will rationalise or dismiss everything I do or say in reference to that label – enthusiastic? Nope, just bipolar.  Annoyed? Nope, bipolar. Inspired? Loud? Introverted? All symptoms.  You stop being a person.

Stephen Fry’s psychiatrist is talking about how difficult travel and crossing time zones can be to managing your mood. It reminds me of the difficulties I had whilst I backpacking round the world with my then-partner.  She would become furious that I was exhausted by our flights across time zones, and furious my mood would plummet with my exhaustion, and furious I could not explain why I was so unhappy so suddenly.  It made me anxious, guilty, furious at myself.  I turned her lack of understanding inwards and began to hate myself for all the things I wasn’t; all the ways I couldn’t be.  We split up many years ago now, and since then I have learnt a great deal about my needs in terms of rest and sleep – but those experiences burned me and I find it difficult to imagine being in a relationship ever again.  Who would live with cyclothymia if they didn’t have to? That’s what dating someone with cyclothymia means; you have it, we have it.

Narrator is talking about frequency of self-medication versus reluctance to take prescribed pills.  Sadly, the show seems to dismiss this as bipolar folk simply being unwilling to put up with side effects and preferring to manage our conditions in other ways.  This obviously resonates with me – I’ve written before about self-medicating and my attempts to manage my cyclothymia with lifestyle and other changes.  But, as I’ve also written, the choice between medication side effects and uncontrolled mood swings is nowhere near as simple as psychiatrists would have you believe, or this program suggests.  Medication side effects are brutal.  Not enough is done to facilitate good medication choices, not enough is done to help people manage the side effects, not enough is done to acknowledge how destructive side effects can be on every other part of your life.

I note that, in reference to Scott’s experience, the psychiatrist shrugs off his query/anxiety that he will be ‘like a zombie’ on mood stabilisers, exactly the conversation I had with a psychiatrist, and it proved completely inaccurate.  I was zombified.  It became untenable for me to live like that.  No follow-up on Scott after he doubles his lithium dose, I hope it works for him, I fear it won’t.  I note also, there’s no discussion of talking therapies or alternative approaches to treatment – it’s ‘medication or nothing’ on the NHS, regardless of how ill fitting that may be for an individual.  This issue – and the considerable weight of evidence which suggests medication-as-only-intervention is an inadequate way to manage mental ill health – is offered in response to the show in this blog by Richard Bentall, Professor of Clinical Psychology at Liverpool University.

Rachel’s story of experiencing her worst lows at night, alone, as a teenager resonates with me.  The difficulty for parents to identify more-than-average-teenage-melancholia is enormous. The story of medical services failing to identify her mania after she jumped from a balcony is all too common.  The discussion between Rachel and her CPN about sectioning her if she becomes a danger to herself in future is really concerning for me, because it’s evidence of fire-fighting rather than working on managing and improving her overall health through a variety of interventions (not just medication, which is all they say she has currently) now.  But I may be making too many assumptions with not enough information here.

It strikes me there is an enormous selection bias in this show towards people who believe it is easier now than ever to speak about mental health issues and receive a positive response.  Because if you’ve not disclosed to your friends, wider family, whatever, it’s because you are aware (or sure) of the potential for a negative reaction – so you’re certainly not going to blow your cover by contributing to this show.  If you’ve experienced negative responses you are not going to keep talking – this idea that ‘we’ can only combat stigma by talking is incredibly problematic for me.

When you are subsumed under stigma, you simply cannot speak, cannot contribute to some ill defined, under funded campaign to combat stigma.  Time to Talk Day came and went this year and I did not mark it on here.  Why? Because I didn’t talk about my mental health on that day to anyone who did not already know.  Had any of my friends who do not know about my cyclothymia asked how I was, I would not have disclosed my difficulties to them – not least of all because my mood was pretty good on the 4th of February, but also because a charity-sponsored day does not make people more prepared to deal with the mental vomit that is chronic mental ill health and the ongoing needs and demands that generates for me.

On Time to Talk Day  I asked all my friends how they were and made myself available to them in all the ways I always do.  But whilst starting a conversation may be a manageable goal, it’s continuing conversations about mental health that is the hard thing, and it’s continuing conversations which will actually start to change or erode stigma, and generate sufficient public feeling to pressure the government to actually invest in mental health services.

The ‘not so secret life of the manic depressive’? For me, save for this blog, it’s still a secret. Stigma around mental ill health is still enormous. And there is still so little out there to help people like me – and people, perhaps, like you – live with bipolar spectrum disorders including cyclothymia; regardless of well intentioned attempts of shows like this to change that.

Advertisements

1 Comment

Filed under media &c, NHS and Professional Services, Uncategorized

World Mental Health Day

I planned to post yesterday in recognition (celebration doesn’t quite fit does it?) of World Mental Health Day but my home broadband is on the blink.  Although, posting a day ‘late’ sort of illustrates what I want to talk about today.

I’ve always been a bit sceptical about specific ‘days’ for various causes, awareness raising or similar because what does it mean to say there is only one day you need to stand against homophobia? Or only one day on which bisexuals become visible? Or only one day on which we need to try and prevent suicide?

I like the idea of rallying people to a single day, bringing the energy together all at once for one big bang of impact.  I understand none of us have the energy to fight, full whack, every day, for each and every cause that has a day. But how many people think about these causes on other days? How many people thought about the importance of campaigning for better funding for NHS mental health services today? How many will think about it tomorrow? How many will act on it next week? Next month?

I don’t have much confidence in ‘awareness’ days. I don’t think they shift how people think of things in any significant way. And I think it’s too easy for politicians, celebrities, and anyone else with only a passing or superficial interest in these topics to ignore the ongoing issues of underfunded mental health services, and WCA-driven suicides (to mention just two of a hundred pressing issues) if they have paid lip-service to ‘caring’ and being ‘active’ on those things in the news and papers the day before.

Ultimately too, for me and for so many of you reading this, ‘mental health day’ is every day of our lives. Thinking about how my mental health is today (good, bad, hypomanic, depressed, stable, wobbly, neutral…) is the most consistent, basic way in which having a mental health problem has reshaped my life.  Even when my mood is fine – neutral, not at either end of a swing – contemplation of my mental health is the foundation of my day. How do I feel this morning? How much can I do? When will this stable mood end? How much can I do before then? What should I commit to now if I might be miserable next week. For this reason, days like World Mental Health Day seem like another reminder of my difference from the cognitively normal who get to neatly end their contemplation of mental health with the conclusion of the day.

What do you think? Does World Mental Health Day mean something significant for you? Does it achieve more than my cynical rendering acknowledges?

1 Comment

Filed under media &c, NHS and Professional Services

On [non]therapeutic interventions and feelings of failure

I’m having something of a tough time at the moment.  I’m struggling with my work and as that is all I have in my life right now, that has an enormous knock on impact on my mood.

At about 3am last night (insomnia ho!) I was reflecting on my experience of CBT; why was it so useless to me?  I thought about a typical interaction I had in any of the 6 sessions at either of the three times I had CBT.  It would go something like this;

CBT Practioner: “So, what is difficult for you at the moment?”
Me: “I can’t sleep”
CBT P: “What stops you sleeping?”
M: “I feel tired, I go to bed, but as soon as the light is off my mind gets noisy and I can’t relax.”
CBT P: “What thoughts keep you awake?”
M: “That I’m a bad person. I think of all the bad things I’ve ever done and my stomach turns to a knot of anxiety and I go over and over and think about how people must think of me as a terrible, stupid, useless person”
CBT P: “Can you give me an example?”
M: [after some hesitation at saying these things aloud] “Yes. I phoned work the other day, my boss answered the phone. I said ‘hi, it’s me’ like I would to a friend, not a colleague, and she didn’t answer, so I immediately said “it’s [my name], it’s me.” And then we had our conversation”
CBT P: “So what makes you anxious about that?”
M: “I imagine she thinks I am an idiot, that I can’t even deal with a simple phone transaction properly. I embarrassed myself”
CBT P: “That one small thing?”
M: “Yes”
CBT P: “Do you think [your boss] thinks about that? Did she say anything? Has she indicated she thought it was odd?”
M: “No. I know that, logically, on the balance of probability, she doesn’t even remember it. I am sure even if she did, she wouldn’t care enough to keep thinking about it or make any conclusions about me. I’d be surprised if she even remembered it, it happened more than 6 months ago [insert time spans of up to 15 years in this for different things that keep me awake]”

And that is precisely the problem I have with CBT.  I can identify my thought processes as irrational, I can imagine the most likely and rational response other people have to all these imagined faux pas, I can even have confirmation from people that, no, they don’t hate me because I didn’t hold the door open for them 6 years ago that one time.  But I am perfectly capable of – skilled at, even – holding two pieces of contradictory information in my mind at once.  I can know, be 99.9% certain that people on the street aren’t talking about me, laughing at me, but I’ll still hurry home and slam the door closed behind me, heart pounding, because there are two parts of my brain – one sane, one insane.

Insane.  A strong word, but in it’s purest, most precise meaning, that can be the only description of the thoughts that drive my anxiety and unhappiness. It is apart from rationality, it is apart from reasoning, and thinking it out.  As I told the final CBT Practitioner I met (who was disillusioned with CBT too, and enabled me to voice my problems with it, for which I am grateful): “if I could think myself out of this, I would have done it already. I’ve been trying to think my way out of it since I was 14”.

He smiled and agreed, ‘yes, it has limitations’.

I can understand I am wrong, and still feel with every fibre of my being, the wrong thing to be true.  When I went private, very briefly, for therapy/counselling, I discussed this with the counsellor. She kept saying, with a bit of surprise, “it’s like there’s a split, you have a split in your thinking, two halves”.*

But I still feel like I failed at CBT and not the other way round.

Right now, for example, I am very unhappy and very demotivated. I’m not getting any work done and I’m angry with myself for that, and that anger isn’t translating into action.  I look at my life; I am financially set for the next 12 months, I have a nice home, enough food, enough clothes, I am doing the thing I supposedly love (PhD) and I’m doing it in one of my favourite cities in the world. I am unburdened by serious responsibility or serious health problems.  What on earth have I got to be depressed about? How dare I?!

And I know, of course, as everyone bleats and shares and reassures “depression isn’t about circumstance, it’s not about how great your life is, anyone can be depressed”.

But, as we established above, I am really good at holding two conflicting pieces of information in my mind at once.  I’d never judge a friend for saying they are depressed when I think that they have a good, or enviable life; I’d just offer support and love and help in anyway I could.  But me? I look at my life, all the opportunities I have, all the opportunities I am sitting in the middle of failing to take advantage of, failing to ‘grab the moment’, failing to do things people would give their eye teeth for that are sitting open to me and I cannot understand why I am not happy.

Why aren’t I living the wonderful life that is sitting open to me?

Why aren’t I happy with all the great things in front of me? Why can’t I think myself out of this?

And more than that, if I’m not happy now with what I have, and I pursue and attain the next list of things I think will make me happy, how can I ever be happy? There is no pot of gold at the end of the rainbow.  Just more “oh, it’s not this pile of things and people and opportunities I need to make me happy, it’s that pile of things and people and opportunities I need, I’ll go chase them”.

It’s unending.  It’s always going to be me saying “just a little further, then I’ll be happy”.

What I need is to be happy here. I have no idea how to do that.  I just know I should be already.

* I didn’t care much for this as a response because that’s diagnostic of schizophrenia, and no, my mind isn’t split – the two contradictory parts talk to each other – that’s the conversation which keeps me awake at night.  It’s also a really unhelpful comment – yes, I know it’s odd I can hold such polar opposite thoughts, how do I stop doing it?

4 Comments

Filed under NHS and Professional Services, self-hood and cyclothymia

As in thesis, so in life….or something.

This blog has been rather neglected the last couple of months; not for lack of ideas, plenty of topics have flashed through my mind but somehow, I haven’t managed to put fingers to keyboard.

I’ve spent much of the last two months being blocked on writing a particular section of my thesis.  Last week I decided to put that section aside and begin revising another section.  Suddenly words flowed again and I began to believe it would be possible to physically turn out enough words, if not sufficient quality of words, to complete my PhD in the next 12 months.  As in thesis so, it seems, in life; I decided to delete my facebook and twitter accounts this weekend (temporarily, most likely) and found I had more hours in my day and lo! The flat is clean, my admin for my job is up to date, and I’m sticking to my daily writing goals.  Which brings us to the blog; I find I have time to think and write and construct a blog post.

I’ve actually had a steady period of mood for about a month now and kept noticing it, and silently celebrating, before returning to whatever I was doing when the thought occurred to me.

These last few weeks I’ve been getting angrier and angrier.  Tiny things began aggravating me, I snapped at everyone for everything they said. I watched myself doing this, watched myself getting angry but didn’t feel I had any power to stop myself – my mouth was running ahead of my head.  I expected this to turn into a depressive period, somehow, it hasn’t.

The last few days I’ve had terrible nights’ sleep, punctuating by frequent waking, feverish vivid dreams, and exhaustion come the morning.  I’m full of ideas but unable to settle on any one activity for more than 45 minutes. I’m still angry.  But I’m also periodically floored by acute moments, minutes, hours, of profound despair.  I think everyone hates me and am convinced everyone is talking about me behind my back/the moment I leave the room. The brain gremlins are chatting to me, recounting every stupid decision I’ve ever made and social faux pas, real or imagined, and assuring me I’m an ass.

It feels like I’ve been emotionally blocked in the same way I was blocked with my thesis writing and now I’m able to write everything I need to – blog, thesis, teaching feedback, teaching coursework – I’m also able to experience all my usual range of emotions, except, much like the writing, they are happening all at once.  Angry, sad, inspired, social, paranoid, exhilarated, manic, disjointed.

It’s a lot. It’s not bad…but it’s not good either. It’s just sort of…everything.

Leave a comment

Filed under symptoms and habits

Professional prejudice

About 2 years ago, whilst living in a different region of the UK, I asked my GP for a referral to psych services for talking therapy. The referral process went like clockwork and I saw a sympathetic and professional psychiatrist who, after doing a full assessment, and hearing my experience with CBT and reluctance to go through it again, recommended cognitive analytic therapy. I was placed on the waiting list.

A year passed and I got slowly closer to the top of the list. However, I also got closer to my planned move to the south east. The same week I moved south I received a letter expressing regret for how long I had been on the waiting list and offering an interim group therapy appointment. I called them, thanked them, and explained I had moved to a different region. They offered to write a referral letter to my new GP to pass on to the psychological services in my new area, which they wrote and dispatched within a couple of weeks.

So far, so simple.

My new GP praised the letter which explicitly asked I be placed on a waiting list for CAT and the length of my wait so far be taken into account. He passed it on to the psychological services in my new area.

Which is where it all fell apart. I was rejected for CAT in this area because cyclothymia is not a “serious condition”, which was the criteria for being given CAT here. I was not seen, spoken to or assessed in any way by any mental health professional. I was just rejected wholesale and referred to a separate part of the service which only offer, you guessed it, CBT.

I kicked up a fuss, complained to PALS, calling my GP, but they wouldn’t budge – I was not ill enough to qualify for CAT. I was, however, offered an assessment interview by the folks who do CBT. The director of this service, we’ll call him Bob, offered me an alternative: Dynamic Interpersonal Therapy. Based on what Bob described, DIT sounded Freudian as hell something which, as a queer woman, I try and avoid at all costs.  But it’s testament to my desperation for some support that I agreed to be placed on a waiting list for assessment. In the meantime Bob told me he,would send me some pamphlets on DIT.

The pamphlets arrived when I was up to my ears in university work so I put them to one side with the intention of reviewing them later. The assessment interview rolled round and then everything went to crap

After running through the usual questions, Bob baulked when I listed anti-psychotics as one of the medications I had taken for my condition. He expressed doubt we could continue with the assessment. “I never had psychosis,” I volunteered, desperately. He raised his eyebrows and said “ok, well, as long as you didn’t…” He asked me if I’d read the literature he posted to me, I confessed I hadn’t had the time. He leapt to the offensive “why should I believe you will be committed to this therapy if you don’t even read the leaflets?” I replied, again with a hint of desperation, “I just haven’t had time, I would be committed.” “But,” he said “what if it’s like CBT and you just say it doesn’t help you? You say you’ve had three rounds of that, perhaps you’re just not willing to make it work. How do I know you won’t give up on this like you’ve given up on that?”  I’m really desperate at this point, the only support I’m being offered, however inappropriate to my needs it might be, is on the verge of being taken away because despite having been on waiting lists for over 18 months, I apparently don’t ‘want it’ enough. I promise I’ll be committed to the therapy, and assure him that what he is offering will help me if only he’ll give me the chance.

I dated a woman a few years ago with severe asthma. She was hospitalised and lost her job because she was on sick for a year. The specialist doctors in hospital gave her immediate relief from her breathing difficulties with oxygen and steroids.  These doctors worked, over the next year, to find a daily drug inhalation that would keep her breathing normally. At no point did she have to prove she would use the new inhalers before they would give them to her. She wasn’t expected to provide an explanation for why the inhalers she was using before she went into hospital had failed to keep her lungs expanded. When the first drug they tried didn’t work, they adjusted the dosage; they didn’t accuse her of not trying hard enough to breathe.

There’s a lot of talk out there in the mental health activism world of getting the proverbial man on the street to understand mental ill health is not laziness and that those people with mental health issues cannot simply “get over it”.  But my experience in the south east is that mental health professionals hold a good deal of prejudice. What other explanation is there for the threats of removal of access to all support, and accusations of not being willing to participate in treatments I had sought out?

I was not a “good” patient, I didn’t get better from a decades long mental health problem in 6, 50 minute CBT sessions. I was offered a therapy in one area which was denied to me in another based on arbitrary access criteria and not my personal circumstances and experiences. I had a history which included anti-psychotics which the assessor was ready to disqualify me on, but absence of psychosis would have prevented me from accessing any other treatment. I was treated as unwilling, unreliable, and difficult because I had the temerity to state that previous therapies hadn’t helped me and was seeking help living my life healthily.

I felt humiliated in that assessment. Unlike the earlier one with the psychiatrist, my experiences and needs weren’t heard. The psychiatrist in the first assessment described my request for therapeutic support as “entirely reasonable” whilst Bob implied a therapy that helped me was asking for the earth.

About 6 months later I received a letter telling me that they were clearing the waiting list and if I didn’t reply saying I still wanted therapy within 14 days, I’d be removed from list. I didn’t reply. I couldn’t face that humiliation again so I guess Bob proved himself right about me.

3 Comments

Filed under asking for help, NHS and Professional Services