The Legacy of a Label

On my sick note is scrawled, “BIPOLAR DISORDER”. The medication I’m prescribed is for bipolar disorder.  And yet I still struggle to say, “I have bipolar disorder”.

In 2007, I said it a lot.  Newly diagnosed and in that unavoidable, “overidentification” phase (which you may after, or instead of, denial).

Now, even with psychiatric and doctorly and friend-o and husband-o opinion agreeing with that, I still can’t say it without much hesitation and an immediate feeling that I have just told a terrible lie.

Some of you may remember that a few years ago, and after listening to the Radio 4 play based upon this blog (that sounds arch and insulting, but apparently it was part of the rationale, though having spoken to him in the past year, I give more credit than that and may have misinterpreted), my psychiatrist at that time said I did not have bipolar disorder but borderline personality disorder. This was a punch in the gut.  I had always been open to the idea that I had borderline personality traits (I certainly did when I was younger and I cringe thinking back to some of it) but I had accepted I had bipolar disorder.  I spent years on punishing medications, which is one of the reasons I think he changed it to BPD, without knowing that I was quite uncompliant most of the time, because the side effects were horrendous.

This diagnosis came at a time when I was doing very well, was stable and quite happy and had actually approached with to ask if I could have help coming off my medication. Which he said I didn’t need.  And said I shouldn’t, “self diagnose”, a punch that missed the stomach and went straight for the balls as I had sat in room after room being told not to have children (and this was a factor in my having a termination), not to drink, not stay up late, not to work, all at the tender ages of 20-21, when my mind was full of future of children, and fun, and work. To be told it when the carer/patient dynamic was one of the things that destroyed a relationship, to be told it when I had gained so much weight and was puffy and glazed and had sat in baths while my hair fell out on Depakote and retched and shivered with Lithium toxicity and watched my sex life dwindle on antipsychotics; became the way a, “mental patient” speaks, the way a, “mental patient” looks, in clothes too small because cloth can not keep up with quetiapine, and ever shaking hands. Humiliating letters sent to my family to explain my diagnosis. Care plans, there forever.  Applying for benefits, attending soul crushing medicals. All for that.

I left feeling shocked. And BPD was fine. It was the, “Self diagnosis” thing that really killed me. It was the feeling of judgement, of dismissal and also of profound misunderstanding. I had been diagnosed with bipolar disorder while in a psychiatric hospital.  I did not do that to myself.

I felt feeling like a fraud.  Especially as my blog and my writing had gathered a little following and I had accidentally made myself a bit of a spokesperson for bipolar disorder.  People asked my advice, people listened to me.  I had never meant for any of it to happen but found value and meaning it.  Some people said I was a professional victim, but I have never and still do not feel like a victim.   I was embarrassed.  I was ashamed.  Not of the diagnosis itself (though I was a bit ashamed) but that I had so voraciously championed having bipolar disorder. Like a tit.

It was no accident that I went from writing here constantly and getting to 1 million hits and then stopped writing and hid. Although the diagnosis changed nothing about who I was, I had, and we all do to an extent, internalise it. I felt, simply, that I was a charlatan and had no right speaking up about bipolar disorder.  And to an extent, I still feel that way.

I felt ashamed that I had spent most of the time of being treated for bipolar disorder in a relationship in which he had to counsel and care for me, and had used it to understand my experiences.  It is still a kind of shame that I carry.

Most of all I was ashamed it mattered at all. Something that meant nothing years ago now did.

When I visited my GP, they spoke to me like dirt.  They asked me if I had been self harming (I hadn’t in quite some time) and made me prove it by pulling up my sleeves, which was traumatic. Nothing I said had credibility, and I wasn’t allowed more than weekly prescriptions in cased I overdosed, except that I had only done so once since 17 year old experimentation, and even that was written up in hospital (I later found) as, “because she had a fight with her boyfriend” which absolutely untrue.  So I didn’t go to that GP anymore.

Since I didn’t need my medication (it was Seroquel, one I did take faithfully for a year or so, which I still do, though I’m trying to get off it), I came off it.  I became quite unwell, if you can call it that, because it was largely fun.  I stopped sleeping, I became fixated with selling my flat (that I didn’t own) and moving to Paris and in pursuit of sleep took a holiday, instead walking up and down the beaches at dawn. I went to social worker appointments with a tiny dress, no pants and my period, spinning around on disability bars in reception, upside down, revealing myself, laughing, have a lot of sex and talking a lot. And it was good.

She urged me to take my medication again, and I did, patchily, and the sleep did help somewhat, but not entirely. It curbed some of it, but then it changed.  By the end of the summer I was roaming the streets with wine bottles, restless, and became quite paranoid. My good mood faded, replaced by rage. I would smash my head against the wall and roar, kick doors and throw things out the window.  I started hearing voices talking and I kept having to go and check the hall to see who was there, standing, calling, never to be answered.  I paid for a downloaded software to analyse where my emails were coming from because I didn’t believe they were coming from my friends, that they were lying and replaced.

It all sounds severe, but I started taking antipsychotics again and then crashed into a bad depression.  So that was fun. I actually called my social worker, something I had never done before, and she told me to come in where I sobbed, something else I had never done before.  I felt terrified, despite having been through that before, I didn’t expect it, and it was terrifying. I had a choice between admission and crisis team, so chose crisis team. In the meantime, the massive freefall into depression from months of being chirpy, active and talkative, then a bit mental, tore a hole in my relationship as he struggled to understand what had gone on. It was as though I had been replaced by a different person.  I sat miserably on my birthday, he having actually gone out to get me my favourite meal, some fizzy booze, and felt fucking suicidal. It was awful.

Knowing my now-husband did not understand and was struggling, my social worker had a meeting with both of us and explained to him…bipolar disorder.

So, I was prescribed a short term of antidepressants, and it helped.  Within 2 months, I was much better.  I had to go and see a GP- it was a different one this time- though I can’t remember why, I think it was to explain I didn’t need a new prescription.

“But you must keep taking your medication”.

“Why?  I don’t need it.  I have borderline personality disorder”.

“No, you have bipolar disorder, it’s very important you take your medication”.  And there it was, on the frigging screen. And still is, apparently, and I have been treated as such by psychiatrists and GPs. Either it was changed back, or it was the covert, “bipolar, but we really mean BPD” thing, which they often do.

Ever since, I have been wary of doctors.  I have been treated with kindness- my first appointment with a GP here whom I sadly never saw again bought tears to my eyes with kindness.  I was doing fine, as I mostly have been save for recently, and she said it was good I understand my “triggers”, my, “red flags”, that they were always there for me and I could call anytime.  It was comforting.

The older I have become, the more I think that bipolar disorder, or at least mood disorder, is correct.  I fundamentally misunderstood bipolar disorder myself when I was younger.  I said I had ultra-rapid cycling.  I had, in fact, never been diagnosed with this (I have been diagnosed with rapid-cycling bipolar, however). I diagnosed myself *shakes fist at psychiatrist* because I misunderstood the nature of bipolar disorder. That was because, to me, when I was diagnosed and over-identifying and looking for a reason, every mood was an, “episode”.  I’d have a night of drinking and being loud and spending too much and think, “Ooh! I was hypomanic!”  But I wasn’t (I was 23).  And I would excuse shitty behaviours with the same excuse, and I shouldn’t have.  If it lasted a day or less, it was emotions, and it was emotional instability.  Not moods.  Mood is the overriding thing and while someone can have ultra rapid cycling, I think it is rare. At the time I was pissed by the, “unstable sense of self” thing because I have been quite the same person forever, and was irritated that my dyeing my hair was, “unstable” when I’ve been doing it since I was 13, and it’s largely because I don’t really like/can’t afford clothes so it’s a nice way to freshen my look. But in retrospect, I did have a sense that I was, “evil” or, “good”. Not really anyone else, but me.  When I was much younger, I was also a total liar.  I was trying to big myself up, to be more interesting than I was. I also told bad lies to cover worse truths.

Now I am the opposite- I am completely honest with people and with myself.  (Some of my, “lying” took the form of psychosis when I was 16). I wasn’t great with being left alone, but I am now.  I am quite settled in who I am, I like being alone, I feel incredibly secure in my marriage and so on and so forth. But at one point, some of it was true. And realising that was actually very helpful as it meant I stopped and checked myself. I did sometimes react super-quick to anything, whereas these days, I’m quite mindful and moderate, and that was a wonderful thing in my life, even though it means I have also become quite boring. I wondered at the time, “Was my reaction to this diagnosis because bipolar had become assimilated into my identity?”- a self awareness I was not credited with, but one I think was true.  And it meant I began to step back from the importance of bipolar as a diagnosis.

Part of me was also grateful for the borderline diagnosis, as, when I had been told about it, I was told I had also recovered from it.  When I actually sat down and thought about it, my reasoning was, “Okay, so, if I’ve recovered from this, I don’t have a shitty, life long illness.  This is GOOD news”. And once I stopped fixating, things got easier.

But. On the background of that instability were moods. The instability stopped, for the most part, during proper mood swings. The moods are different.  Emotions swung from despair to anger and back again, but my moods swung from depression and despair to normal to elation and irritability and lasted a much longer time. Affected everything. From awakefulness to neverwaking. Were not who I was.

So it was all complicated by this instability that existed within me, and my general personality, which is to be analytical in the first place, and a bit of hyper vigilant.  When I look back, it is clearer to me now. The very long period I have had of being high functioning, groovy, mostly stable (save for normal stresses) without a whiff of BPD nor bipolar disorder beyond the medication effects and my general social awkwardness, makes it make more sense to me.  My moods, in the absence of the instability and other youthful behaviours and coping mechanisms, have become more sharply polarised and more noticeable as being, “different” from the way I normally am.  When I think back to my late teens, I was unstable, but I was also the person who used to infiltrate classrooms and talk and talk, until the break ended, constantly to whoever listened and stayed awake, laughing, breaking things gleefully, half my boobs out, indiscrete then believing I was a famous comedian. Before that was a depression that meant I missed most of my GCSE years. That period got me kicked out of college for being bizarre and hyperactive.  I forget that sometimes, why I am a 27 year old student, and am sad for it.

But overriding it all confusingly was emotional instability.  It was the start.  And I have found it difficult and confusing to separate myself, and had hoped that when that went away, everything else would, and it didn’t.

But that diagnosis before has made me so reluctant to get help when I need it, for fear of being dismissed.  And that is not a problem with me, but in the way personality disorders are treated and it pisses me off.  I almost want to say, “Yes, it’s not bipolar, it’s a personality disorder, so go on, treat me with the kindness that you just did”.

Recently, I have been depressed and it came as a shock.  I get the, “typical” bipolar depression of sleeping too much, eating too much, slow speech, slow thoughts,  guilt, feeling better in the evening, episodes being relatively short, etc.

At the moment, for the past 11 days, I’ve on Lamictal (as well as Seroquel). I am supposed to titrate up to 200mg, but I was so desperate to feel better, I thought, “Fuck it, I’ll start at 200mg”.  Which worked.  I am less depressed, but I think a lot of that also has to do with not working shifts, getting regular sleep and generally being able to take care of myself in a way I wasn’t able to while being a student mental health nurse.  And that gives me a lot to think about, that I may really have to deeply consider that I might have limitations I need to accept.  At the moment I am drowning under stress due to my habit of consistently taking too much on (moving house etc), still on a bit of a knife edge and feeling weird, and I know it’s not the time for big decisions.  This may not be recovery, this may be the effects of a high dose of a medication I have newly put into my body and on a dose I shouldn’t have.  This feeling better is fragile.

It has worked and been very activating (for a few days counteracting Seroquel to the point in which I could not sleep, at all, which felt weird after months of barely being able to get out of bed and crying myself to sleep) but I am now going to titrate properly as it seemed to be having a bad effect cognitively- yesterday I kept falling over, mixing up words and generally being dumb as fuck.  Today, I feel somewhat better, although I am so paranoid about THE RASH that I freaked my husband out so much he didn’t want to go to work yesterday.

But I still go, “Why am I taking this?” and feeling a flash of anger that I was put on medications so young for an illness I may not have, but probably do.  I wonder what the hell they did to my brain and if I should chuck them all away. I also feel flashes of anger that my language was taken from me.  Since I was 20 I have been talked to and speaking in terms of medical things; hypomania, depression, hypersomnia, etc. I no longer have the language to describe succinctly- this is why these kind of posts exist. Emotions and moods stripped to diagnostic criteria.  And once you begin to think that way, it’s hard to stop. Especially in my profession too.  One of the reasons I’m thinking of dropping out and doing psychology; I know there is a language, but to me, it is a more humane one.

And it has also given me suspicion of the medical model, which has come partly from age and education, and being more mature.  I was quite dogmatic at the beginning, and now I have a better understanding of my own experiences and how they contribute to who I am. I was keen to blame everything on a fabled chemical imbalance, while trying to minimise the trauma I had experienced, something I still do.  A friend of mine called me, “Rubberband Girl” due to the fact I could snap back from stuff which would knock people out for good.  But it took its toll, I just never really liked to admit to it.  I have been through a crapload of trauma and difficulty, and instead of feeling proud of surviving it, I pretended it didn’t matter. (You will not be surprised to learn- it did. And does).  I just suppressed everything and, in a way, hid behind the bipolar label.

I am more in touch with that now.  Recently, with moving, my husband says I get, “itchy feet” and finds it ridiculous that I enjoy looking up domestic things like curtains, that I pore over them, find them important.  I get itchy feet because I am used to being moved around.  This is the first time in my life it has been my choice.  I enjoy domestic things because for so long I was incapable of them.  I get a lot of pride in being responsible, paying bills, caring for myself.  I had a bit of an emotional storm during the wedding planning and the weeks before, when my past just seemed to hit me. I cried and shouted and raged, and it was what I had needed to do for a long time.  I am very self obsessed, I know this.  It was a self obsession I had to cultivate to keep my emotions in check, and, later on, my moods.  Psychiatry teaches you to be self-obsesssed while at the same time condemning you for it.  It tells you to be aware of yourself while at the same time telling you to stop thinking so much.  (My mum, when I was younger, used to say of course I was mad, I was a genius.  I wish she still thought that).

But there is also the little, “Your mum is mad and probably has manic depression, you grew up with her depressions and psychosis and you grew up with her cleaning the house at 5am, screaming, hyperspending and consistently getting us into debt and moving us around, your dad was an alcoholic, you probably inherited this, too” voice inside me. But it would say the same thing if I had borderline personality disorder.

I know it doesn’t matter, to me, in my heart.  I’m still me. My own sense of self does not rely on a diagnosis and, if anyone, the experience made me realise how fluid they are, how okay I actually was. The diagnosis helped me to be more honest with myself, and honestly, at that time, I was pretty okay.

But it does matter in some circles. I’ve been told constantly, “labels aren’t important”. But they are, and I found that when I had those two GPs.  I will find it when I register with my new one when I move, and get right in there with an appointment to discuss some physical stuff before they’ve had a chance to see my records and before they judge me based upon them.

It also matters in the sense that I have never quite shaken that idea that I have no right to talk about bipolar disorder.  At the time of the change of diagnosis, I saw some blogs which expressed their surprise.  Some people used the phrase, “bipolar poster girl” and it made me cringe.  I had never intended for that to happen. I never intended to be a poster for anything, and I don’t think everyone’s experiences are so similar that anyone can be.

There are better blogs out there now, I have mostly been fine for years, and I have faded into relative obscurity as a blogger.  But because this blog is still here five years later, I sometimes get approached asking me to speak upon it, and I usually refuse. When they ask me about my experiences of living with bipolar disorder, I say I don’t want to use that phrase- not just to avoid labelling myself (I was, “bipolar writer” to people, which annoyed me, which will ever shall be, but I don’t blame them, because- well, I write this blog) but out of shame that if I say it publicly, someone is going to “out” me.

And regretful.  I took a lot of joy and meaning from what I used to do. I very strongly identify with the experiences of people who have bipolar disorder.  Nowadays, my interest has become academic and I love mental health. Whatever happens, mental health (implicitly linked to me with social justice, human rights) is the area I want to work in, in whichever capacity I can be helpful.

At the same time, I have to hide my own mental health problems working in, “the system” and am in the double bind of wanting to say nothing and wanting to shout it at the same time because I am sick of hiding that I am drowsy due to antipsychotics and that I really honest to god cannot do late-earlies and night shifts because I cannot mentally cope with not having a regular sleeping pattern, which keeps me sane. I am sick of hiding the fact that my concentration and energy wax and wane, that yes, I did self harm, and rather badly for years, but I don’t have the plague, so please, let me pull up my sleeves without you staring at my arms because I am hot and itching under this.  I am sick of hiding that a lot of my sympathy and compassion comes from the fact I was a service user for such a long time, and when I hear shit chatted I want to butt in with the truth that, “us and them” is in fact “us”.

I want to start speaking out again.  I want to start writing again.

But I still can’t say I have bipolar disorder.