Redux- labels, identity, treatment and deciding that it no longer really matters

Garbled entry ahoy!  If you can’t be arsed reading it, here’s the summary:

My social worker does not agree with the BPD thing but also thinks most diagnosis are subject to change from doctor to doctor.  Which is good and was what I was mostly upset about, as she’s known me for eighteen months and had never expressed concern about my relationships etc.   I don’t have a problem with BPD other than its inaccuracy and also the, “KA-POW!” way it was dropped on me.  It was proper, “Oh, by the way…”  I was upset that I felt things had been kept from me when I had asked outright a few times.

I’m not  too upset at the moment since I’m neither being referred for treatment for anything BPD nor am I taking medication.  The only useful thing about diagnosis is the treatment, so if I’m not being treated, it doesn’t matter.  Well, it does, but  I haven’t got the energy to seek a second opinion or challenge anything at the moment.  All I want to know is that if anything goes wrong off medication, I will be taken seriously and helped, and I’ve been assured I will, so!  I’m not entirely confident that I will be, but at least my social worker doesn’t agree and she might, at least. That’s what’s important, knowing that if something goes tits, I’m not alone.  If something doesn’t within the next few months, I am making a graceful exit from the community mental health team.   For now, I’m being kept an eye on.

I feel okay, physical ARGHs aside with withdrawal still kicking my arse and making me feel incredibly ill and making it hard to do much.  This whole thing has actually been a bit of an eye-opener.  I’ll see how I do off medication.  These are unknown lands for me to wander in.

This was at the end so if you don’t read that far:

So! I shall continue to blog, whatever label I have or have not, as it’s original intention has always been to monitor my moods and write bollocks, and that hasn’t changed.  Thanks for your support and for putting up with my wailing.  It’s much appreciated.

For the long version:

I feel a lot better after an appointment with my social worker.  I’ve spent the past five days kind of OMG CLICHE soul searching to see if I had been blind or missing something, or if I was being dishonest with myself.  But I still don’t agree with the borderline label, and nobody close to me who has been around in real life to see me agrees with it.  If it was ever applicable, then I’ve recovered from it.

My social worker doesn’t agree that I have borderline personality disorder, either, though she doesn’t think diagnostic labels are too important if you look after the person.  Things like schizophrenia aside, which she says can be so severe that they degrade the personality.  She said the psychiatrist first met me after an overdose, and y’know, people with bipolar don’t take overdoses, do they, that’s BPD innit, and also that every psychiatrist will have differing opinions, that one might say bipolar, another will say BPD, another might say psychotic disorder, one might say schizoaffective disorder (which was indeed toyed with), etc etc etc.  But she doesn’t think BPD is applicable to me.  She’s never explicit with these things because she’s more on the holistic side of matters.  I have admittedly put too much trust in psychiatrists, but I feel more able to manage myself, now.  In the past year, I’ve been moving away somewhat from being so rigid and invested in my diagnosis.  I needed to be, in order to get better- if I had never acknowledged it, I would never have dealt with it, which is misery all round.  I overidentified with it a bit as it was relieving to get help, and then went through the process of separating my moods and seasons from my personality.  Which is difficult when you’ve been swinging from pole to pole for a good long time, but valuable, in the end.  I have so much more sense of myself now.

I am far less inclined to be, “Hello, I am mental!” these days, so I’m less upset about it all than I would have been, though in some ways I feel a bit silly being a bipolar blogger with doctors questioning the diagnosis!  Bit like John Diamond rising from the dead and shouting, “SURPRISE!  I DON’T HAVE CANCER!”  Still, my experiences haven’t changed- this is just, er, a new one!  I’m still a little angry at it all but I don’t have the energy to pursue it.  And I’m not sure how much it matters in the grand scheme of things; if I’m not pursuing treatment for anything, the label/diagnosis/etc doesn’t really matter.  (It does a bit to me, but hey).

Still, I’m glad about her opinion, as what had upset me a lot was that she had spent eighteen months with me without knowing me and keeping things from me.  I asked why the psychiatrist had said, “don’t self diagnose”, saying that I had been diagnosed formally with bipolar disorder more than once, and when in hospital.  She referenced a letter from a psychologist (who did not have access to any of my medical files or correspondence) in 2006 that said I had borderline traits.  So they had worked from that- but that letter, which I have in front of me now (I had dug stuff out to see if I was somehow imagining things) said bipolar disorder with borderline traits, and all my DLA stuff and CPA stuff says bipolar disorder, rapid cycling, psychosis.  My CPN wrote a letter to my mum explaining it! So, you can see why I was a bit, “Eh? I didn’t!  I’ve been going off what I was told and treated for!  Why the fuck did you drug me then!”

Apparently part of the problem with the bipolar diagnosis is my age!  I’m 24, and that’s young to have been suffering from mental illness for twelve years.  I went nuts in my teens and then had years and years of severe mood swings and psychosis, but since my stay in hospital in 2006 and some Crisis Team months, I haven’t been back to hospital, nor had a very serious manic episode, which is not what would be expected of me.  My CMHT deals with the more severe cases of mental illness in the borough so by comparison, well, I’m quite okay!  So was it something that I grew out of?  I don’t know.  I had just supposed that antipsychotics, which I’ve taken almost constantly, had kept me mostly unmanic, because it’s been off them I’ve gone doolally, which she has observed. I tended to mostly miss appointments when my mood was high, too, so obviously I couldn’t explain or be there to say anything.  But that confuses me because loads of people have one or two episodes and then are okay.  Still.

She also said that my body image problems blur the boundaries, too because BDD and bulimia aren’t that often seen with bipolar people.

I told her that I was angry if that nobody had reassured me or discussed things with me due to my abortion last year, which I explained before.  She understood that.  They put the fear of bloody god into me.  My mum has manic depression (she says, and she is completely mental, so I’d believe it, but there’s, er, other stuff there too) and she had postnatal psychosis when my little brother was born, and it was terrifying.

I trust and value her opinion more than the psychiatrists.    All I wanted to know was that if something does happen off medication that I will be taken seriously and given help if I needed it.  She assured I would be, and that’s okay for me.  I just want my arse to be covered, to have an, “In Case of Emergency, Please Break Glass” hovering somewhere.  I would be quite happy to discover I don’t have bipolar and just Random Mentalism, then I might not have to deal with it for the rest of my life.  In one way, it’s nice to be told they don’t think I’m that bad.  On the other hand, it’s a bit belittling, because it’s kind of like, “Then what have I gone through?  What was it for?”

We shall see- my personal opinion, and that of those around me and I think my social worker (I say think because I’m not entirely sure, she acknowledges mood swings and uses the word mania etc) is that I have bipolar disorder but of a less severe variety these days than before.  This is good! They hadn’t seen me before the age of 21, so they don’t really know much about those times, and I dodged all my psychiatric appointments in Belfast.  I also have no idea how they expected me to go manic on Seroquel; it’s been like a medical lobotomy.  I’ve barely been able to think straight on it, let alone go mad.  Depression has been the problem more than mania for about 18 months.   I was a bit pissed at the doctor putting an overdose down to “relationship problems” (which I wasn’t haven’t, to my knowledge), when I’d started taking Effexor a month before and was severely depressed before then.  I’d had numerous bad, impulsive reactions to antidepressants, and I had felt physically very fucked on them and mentally completely buggered.

Either way, I’m not sure it matters if I’m not taking medication for it- diagnosis only really matter as far as treatment, so!

I asked if I could be discharged soon as I feel I can get by without the CMHT now.  I’ve been with them since 2006.  We’re giving it to September as she still wants to keep an eye on me off medication, in case I go manic or depressed.  Which is fair enough and will probably settle any arguments, arf.  I am not being referred to any treatments for borderline personality disorder, either, so nothing to hang around for.  I feel I’ve gone as far as I can with the CMHT.  For a while now it’s been mood-monitoring, and therapy hasn’t been useful to me, nor do I feel I’m in the right place for it.

That said, I don’t really want to go nuts and I’m being quite careful in how I’m managing myself.  Cut down on caffeine and making sure I sleep at all costs, even if I struggle to, because it’s sleep that fucks me up.  Robert’s coming along to my next appointment as she’d like to meet him and also would like him to keep a bit of an eye on me, too.  If by September I’m okay I might be discharged, but if something happens, I can always go back.

Fuck knows about going back to work.  That’s what scares me about leaving the CMHT.  When I asked to be discharged, my social worker said it was a crap rebellion because they were understaffed anyway!  I hope she got that it wasn’t a rebellion, just my feeling that I’ve gone as far as I can with them.  But I still need them in terms of practical things.  I’m not ready for work yet, and she agrees, and so does Robert et al.  But I’m trying, and mostly failing, quite honestly, since I’ve been going through the wringer of withdrawal and low mood, to do bits of writing, and gradually getting myself more disciplined.  I don’t feel my life can move forward on benefits; I’m broke, I have no freedom in terms of where I can live or who I can live with, but I’m still not stable enough for work, and besides, my CV is now fucked.  I just hope some kind people look upon everything favourably and give me a job, let me write, or take me on for training to work in mental health.

I’m sorry if my wailing here has been come across as being stigmatising to BPD: it’s not intentional, and my reaction was out of shock and annoyance, not, “oh god, BPD is for smelly people!”  I was late to the appointment because I’d just woken up, and the doctor and social worker were both stressed, it lasted all of ten minutes and was kind of dropped on me without discussion, leaving me tearful and open-mouthed.  I wouldn’t mind, I just feel it’s inaccurate and that my social worker had just not known me.  I may seek a second opinion but not right now.  I know it’s on my file amongst other things but I don’t particularly care at the moment.  I don’t have the energy and I want to see how I do without medication anyway.  If things go wrong then I will (finally) accept that I need to take the medication and get on with it.  If things don’t, then hurrah!  I am well.

In without medication news, I continue to be mostly okay, some physical stuff aside.  I have lost my appetite, am having some racing thoughts (or brain noise as I refer to it, which nobody knows what I mean) and I’m not sleeping all that well.  I get to sleep because I take two Nytol and sleepy tea but I wake up quite a lot.  I still manage though, and feel a lot less zombified. My concentration is still not great (racing thoughts not helping, and it’s difficult to concentrate on speaking too, too), and I’ve been having some trouble with nausea, shaking and not being able to stop clenching and unclenching my jaw, which is giving me a headache.  I’m in rag order but trying to gather myself; I have felt like I’ve been suffering from something physical, which has taken it out of me enormously and making me a bit down, but it’s just downness from argh stop feeling crap.

So! I shall continue to blog, whatever label I have, as it’s original intention has always been to monitor my moods and write bollocks, and that hasn’t changed.  Thanks for your support and for putting up with my wailing.  It’s much appreciated.

22 Responses

  1. I’m glad that you two were able to get together & discuss this further. Your tone is certainly more at peace, which doesn’t surprise me considering. What that pdoc said would get to most anyone… and how he went about it! I hope that your CNM is more open with you from here on out. Did you say anything like that to her, about the line of communication being more open?

  2. I’m glad you got a chance to talk to your socialworker. Again, I’ve never thought you had BPD at all. And I know you know you dont (does that make sense?)

    x x x x

  3. Im really glad your social worker was able to clarify things a bit more 🙂 you definitely seem much less stressed by the situation, which is good (obviously :p).

    Im glad you’re going to continue with the blog, because even if you dont have a mood episode (fingers crossed for you still!), it’s always great to see someone get better, and have success in getting away from it.


    G xx

  4. I’m glad you’re beginning to feel better; I hope it lasts!

  5. You sound good, Seaneen. Stay strong. We all want the best for you, just like we want it for each other.

  6. Have you ever read “I hate you, Don’t leave me” by Jerold J. Kreisman?
    I was talking about BPD today, and I read that book in 2008 and it did me the world of good.

  7. I’m glad that you were able to find a little bit of relief after your talk with your social worker, but I worry about your fixation with these labels of diagnoses. You may be driving yourself even more “crazy” by trying to figure out what’s wrong with you rather than accepting what you know, accepting that some things you’ll never know, and that all you can do is try to control/moderate your behavior as best as possible. Find a good diet, exercise, meditate, journal…

    (BTW, I was diagnosed with bi-polar AND I’m a recovering bulimic. Eating disorder does often times come with bi-polar disorder, or at least a person suffering from traits of bi-polar.)

  8. I’m really happy your going to keep blogging. I kind of know your frustration, in a way. My doc keeps referring to my “bipolar-type illness” like as if she’s dodging a diagnosis, even though I’ve had a proper one and reacted badly to antidepressants, so it seems kind of obvious that is what I’ve got!
    At least I hope so. I just need to put a name to it so I can stick in a drawer with instructions on what to do if anyone needs to break the glass of the “in case of emergency” switch.
    So I guess what I’m saying is, know that reading about your frustration with all of this is at least getting through to one person! I don’t think I’d react nearly as calmly as you, man. You’re something else.

  9. Seaneen honey. We met at last…at the One in Four Conference. I was majorly pissed with you, cos you were so phenomenally rude to me despite ‘knowing’ me from the blog. Then I’m thinking, Zoe, she’s a rude girl! That’s why you like her, duh!

    After that I thought fuck it I’m not commenting on her blog anymore. She don’t like me.

    Or is it like on all the worst rom coms where the boy meets girl, boy hates girl and vice versa, then they end up in a passionate clinch situation!!

    One problem with that scenario. You’re a girl and so am I. Newsflash!

    Look honey bunch. You’re young and manners have a different significance for the younger generation. I’m 48 tho’ I know I don’t act it, and it’s futile to expect you to conform to my standards!

    Please accept this olive branch, and let’s be friends again! You’re a very very special young lady. Here’s to labels babe…xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxZ

    • I’d been wondering where you were!

      Apologies if I came across as rude, I didn’t mean to and I liked meeting you. The whole day was weird because I was very very nervous and distracted. I’d been biting my fingernails til they bled. At the end a lot of people tried to talk to me and I felt a bit overwhelmed. Social situations make me very nervous!

      Sorry, I’m quite mortified by that. I didn’t mean to be rude.

  10. to me bpd is what the doc says instead of idk lol

  11. social workers are cool!

  12. also if and when you are feelin g more ready to return to work it might be an idea to just do voluntary work at first for like 3 hours a week and gradually build it up till you are ready to go back to paid employment good lluck hun

  13. I can’t imagine what being told you have one diagnosis, working on accepting that diagnosis for years and suddenly being told that something else is actually wrong with you would be like. I can imagine I would be pretty pissed off like it sounds you are. You are right though labels are only needed for getting the help you need. As long as whatever help you need, it doesn’t matter if you are bipolar or BPD. Although it would be nice of them to make up their mind.

  14. Good news indeed! It’s great to read that you social worker supports your doubts about BPD ! Hope the medication withdrawal improves soon I don’t know how you can put up with it. On the rare occasions I am without my medication I become jittery as hell and practically scratch my arms to the bone! I like the fact that the seroquel evens me out a lot and makes socialising less problematic as I’m no longer paralysed with depression or becoming hyper and pissing everyone off! I suppose it’s given me a taste of what everyone else experiences as normal so now I have a benchmark I never had before. I am kinda hoping that my brain or whatever has gotten used to balanced moods and the seroquel works as training wheels so I can eventually remove them and I can consider my self recovered. I really hope it works for you and as you say if it does it won’t matter what they diagnose as long as you continue to be well! Just imagine what you will be able to do with all that brain power restored and with stable moods ! The world’s your lobster as a friend of mine often says! 🙂

  15. I’m wondering why they were giving you that mega-potent cocktail of medications they were giving you a few months (or was it years? Forgive me – memory is fading) ago? Someone has royally screwed up here. Maybe some edited highlights of your notes would help clarify things here.

  16. Just a brief PS: I’ve had more diagnoses than you can shake a stick at – plain old ED and depression to schizotypal personality disorder. I remember having a conversation with a fellow patient who seemed to think that everyone with a PD diagnosis was violent. I pointed out to her that there is a whole spectrum of personality disorders and that the only danger I posed to her was that I would probably sit there and say strange things to her. Now I have a ‘compromise’ diagnosis schizoaffective disorder which sits rather well with me because it means I have a combination of schizophrenia and bipolar. Neat little compromise. (A little too neat perhaps…)

  17. So you are too young for BP now you are 24 but it wasnt an issue when you were younger. I dont see the point in sending people to university for six years if they cant agree on a persons diagnosis after a decade.
    The truth is they can call it what they like proving they make your life better but they havnt. The tragedy is that you probably wouldnt be any better off if they had come up with a different name for it.
    If they have treating you for the wrong illness for the past few years you need to see a solicitor.If only to give you something to write about on you fucking blog.

  18. Bipolar people don’t overdose and attempt suicide. I laughed myself silly after reading this.

    As for age… I first showed depressive swings when I was 12 and wasn’t officially diagnosed until age 18, BUT my Psych Doctor very clearly told me (and put in my record) that to her it was clear I’d been having manic swings since very young.

    Main evidence being medications gave me my first introduction to sleep deprivation. Prior to this sleeping had been optional for most of my life. :/

    Bipolar is not COMMON in young people is my understanding, and Doctors are hesitant to diagnose because of the rapid changes kids go through, but not unheard of.

    We’re vouching for you!

  19. […] pm | In Philosophical Problems | Leave a Comment I’m intrigued to note that the author of The Secret Life of a Manic Depressive has gone off of her meds, and is questioning a diagnosis for which she’d been treated since […]

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