Don’t wait to be hunted to hide- that’s always been my motto.

Oh lord, I feel like utter shite.  I spent my class this afternoon trying not to put my head into my hands and whimper softly.  Someone asked me if I had a hangover because I looked, “awful” (charming) but alas, I was in bed by midnight last night.  Which was tempered by my not sleeping the previous day, but still.  I hope I feel better by tomorrow or else I’ll have to be wheeled on then crawl into a nest I’ve constructed of felt and fluff.  I do look awful, though, and have inexplicably gained a lot of weight lately.  Ngh.  Robert and some of my friends are coming to support me- hopefully they’ll tongue bathe me in sweet lies to tell me I look radiant and gorgeous and etc.

Speaking of my class, though, I have a question.

How do I hide that I have am mentally interesting from everybody?  My tutor knows that I did have mental health problems.  But part of me doesn’t even want to apply for the disabled students’ allowance that would give me support through wish of it not being an issue at all.  I will, though, as I am aware I will need the support and am liable to try and take on too much.

“You’re reinforcing stigma! Why are you ashamed of this?” I hear some of you cry.  It’s not shame- well, it is, a bit of my spectacular failure to even get eight GCSEs- it’s just that, y’know, after a little while, you get sick of being treated oddly by people because of it.  It happened to me in school, when I wasn’t a diagnosed mental, just a very obvious one.  It happened in work, too, when I wasn’t being treated yet and was quite clearly off my rocker some of the time.  I just don’t want to deal with it.  I don’t want people to treat me differently- even if they aren’t aware they’re doing it.

It happened, briefly, on Thursday.  Most people in my class have full time jobs and are parents.  Outside, having a fag, the inevitable question, “What do you do?” came up.  I answer this now with, “I’m a writer”, because answering, “I’m on benefits”, “Oh, are you looking for work?”, “Er, not yet” just doesn’t cut it.  And saying I’m writer- though true but not a full time job- avoids that.  When someone asked, “Who do you write for?” I mentioned the BBC and One in Four magazine.  She, for some reason, presumably because she’s worked in the health service, knew what it was.  She didn’t tell me this this enthusiastically, in fact, it was with outright distaste.  I don’t know if she just doesn’t like the magazine, or if she had twigged that I was one of the mentals who wrote it.  The conversation pretty much ended there.

I may just be being paranoid and oversensitive, but it’s nothing I want to deal with.  I feel guilty for it, but I don’t have to be an advocate all the time.  With my course, I just want to put my head down and get on with it.  I know I’ve made myself fairly visible in the mental health movement.  I’m happy with that and willing.  That movement, I always think, is aimed more at people who have mental health problems than not.  Some of those, “not” have a good perspective on them.  Some of those, “not”, don’t. I want to help change the perception of people with mental illness- but I don’t want to feel I have to do it on my access course, y’know?  I WANNA BEH MEH!  If I manage to be well as can be, why should I mention it?

The reason I’m asking is because of our career development module.  We have to talk about, “who we are, where we’ve been” and our barriers to education and things formally.  It’s our life story, really.  Where I’ve been encompasses mental health services and trying to piece my brain back together, and my barriers to education and employment were that I became unwell.  What do I say?  I don’t want people to know my whole history.  (They can do that when my book comes out- if I ever finish writing it! Ahahah).

I’m also terrified of becoming ill.  I’m not that chirpy at the moment but I’m just dealing with it and trying not to let it affect things so much.  I try to act quickly if my mood starts wobbling.  I control them- largely- via sleep.  Simply put- too much sleep makes me depressed, too little makes me high.  I do have periods of normal mood and most of this year- until I hit May- I was just mildly depressed, and that was largely due to tiredness from medication.  (Snipped for the people who are interested in reading on and out of sympathy for people who do not).

When my mood became too high, I agreed to take antipsychotics for a while to calm me down.  It took a while for that to work as it was only helping me sleep but as soon as I woke up, I’d begin to shake and my mood was still high.  Then a crash followed, and I took antidepressants (which I have lost, and have forgotten to ring and get a prescription for which might account for why I’m not feeling good again.  I found them quite activating and have felt noticeably more sluggish and down in the past week and a half of not taking them.  Could just be placebo, but I have absolutely no reason whatsoever to be down) and 200mg of Seroquel to help me sleep.  But it makes me sleep too much, so I end up depriving myself for a while to kick my mood up- then, inevitably, I have to take it again at some point to bring it down, and thus sleep again.

This works okay, but it’s untenable for the long term because it’s impossible to keep a routine like that.  I simply don’t sleep for seven hours on Seroquel, I will sleep for a minimum of twelve, and it’s impossible to wake me up.  When I do wake up, I feel drugged, even on fairly low doses because I’m a midge. I almost have to write off a day to do it, and thus it is tempting to just not sleep.  I function very well without sleep- I tend to become more and more awake, and therein lies the problem, it’s a shortcut to hypomania, I have to be talked in to sleeping, and have to take something to make me sleep.

But because my diagnosis is now (recovered) borderline personality disorder and I don’t have a psychiatrist, there’s no quick intervention for when my moods become screwy.  It isn’t treated with medication, and the psychiatrist writing my Seroquel prescription mostly did so to keep my social worker happy, as she strongly disagrees with his assessment of me as borderline, and had thought during the summer I had hit a manic episode and wanted something to immediately bring me down as I had refused crisis team support and asked Robert to refuse it, too.  So, there isn’t anyone I can ring and go, “Achtung! I need some advice/medication to knock this on the head and take long term”, as I don’t have a doctor who thinks I have a mood disorder.  Robert disagrees with him, too, so he has nowhere to go and ask for help, either.  I’m keeping a mood journal and asking for his input, which is pretty much the best I can do right now, along with being careful not to take on too much or thinking I can.  There’s no doctor anyway- that one has gone onto a new job, and the CMHT is so overstretched that it’s difficult to get an appointment with the new doctor, and I don’t think I really need one right now anyway.

So, in that way, I use my own methods to control them, and long term, they’re not fantastic ones.  Therapy ain’t going to help, because- and no, this isn’t part of Bloggers’ Borderline Denial 2010- my moods really aren’t much to do with what happens in my life, or my past, and the mood coping mechanisms they’d teach me are things I already employ myself.  I don’t think I’d even be referred for therapy.  I had CBT (which was to treat body dysmorphic disorder) and some psychotherapy, but the latter ended in the assessment stage because both me and the therapist didn’t really think there was much to talk about and I was managing alright.

So, what to do?  Any advice?  There is obviously the huge problem that my name is all over the internet connected to mental health, but I don’t think I’d be Googled, and if I was, well, their fault for being nosey!  Like I said, I don’t mind being visible, I just don’t want to feel I *have* to discuss it with anyone on my course unless they bought it up first.

I’ve also started a blog to chronicle my progress on the course.  We were advised to do this (the whole career development module is about self reflection), and it’s mostly for my benefit due to a poor memory, but if students and nurses fancy chipping in, feel free.  I haven’t written in it yet.  It’s here: http://whybutofcourse.wordpress.com/ It’s going to be solely about school, study and etc, because I’d like to keep it off here and off my (currently down) main blog for my own purposes and because I can’t imagine most people would want to read about my struggles with time management and organisational skills.

Now I’m off to bed!

39 Responses

  1. I went through a bit of a similar quandary when I was on my counselling course. There was lots of encouragement to self disclose, and I was totally uncomfortable with it. I didn’t see it as anyone’s business but my own, and frankly was rather over trying to educate every living being that I came in contact with as to the nature of mental illness blah blah blah by then. So I decided to make a list of what I was willing to talk about and what experiences I was willing to share, and then obviously if I felt like changing it due to circumstance, I could, but it was a good jumping off point. I ended up reflecting on my personal experience quite a lot in coursework and a reflective journal, but said very little to my fellow students, even when I ended up relapsing in the middle of the course, and missing a lot of lessons.

    I think key points to remember are a) you are entitled to your privacy, and to protect your own boundaries and b) you don’t have to spend your entire life being a mouthpiece for anti-stigma, you are definitely allowed to break free and be yourself where you choose.

    Hope you’re doing OK Lovely

    Lola x

    • Thank you, that’s good advice. I just want to keep this a bit separate from my little world of mental health. The problem is that the whole, “where have you been” thing is done on our BLE group forum, not just for the tutor, ngh!

  2. First thing you should do is undo that link because even unlinked it will appear in Google here and the connection is made. And your name is the same displayed on both too. So if you don’t want the others on the course reading here you should think about undoing that. I may have misunderstood the above though – somewhat sleep deprived here.

  3. Crikey, I’m not sure I have any helpful answers, although, I regret not applying for a
    Disability Grant for my course, I could have done with the mentoring it would have also
    qualified me for (after an assessment of needs). I became completely overwhelmed by the
    workload (and unbeknown to me but obvious to my friends / husband) was taking on too much.
    Perhaps a mentor from the uni would have stepped in before I crashed, as it was I struggled
    on then had a nervous breakdown, communicated some of this via email to my Tutor who sorted
    an extension but it was too late really.
    I got the last bit of work in (by posting as couldn’t face even going in the building!).
    I made an attempt at sorting the 2nd year funding / enrolment and all but couldn’t handle
    forms or meetings and I get phone phobic (which I am embarrassed to even own up to) so
    I didn’t get anywhere and that’s that.
    They are not running my course again so nothing I can do now, oops.
    What I’m trying to say is; you can get the grant, accept the help and not tell your classmates.
    Sorry, that is probably not much help is it?
    My classmates all know what happened to me now, my friends have been supportive and I was scared
    to admit it all. Only one knew I’d had problems before, I had no idea the crisis was coming,
    I wish I’d had a ‘worse case scenario’ plan now!
    Good luck tomorrow x

  4. Completely agree with Lola – you can tell them you worked in my shitty postroom for years whilst scribbling away at night if you like … it’s up to you and you don’t have to tell them anything you don’t want to. My best advice is to take it one day at a time (I know this sounds narkingly like cliche). Don’t let the worry overcome you – you managed to apply for the course, be accepted for it and attend a few lessons. With that behind you, you can build your confidence around getting through it, bit by bit. Can’t give you any advice on how to handle the mood ups and downs but once again, you’ve done bloody well to get this far, there is little reason why you can’t get through the rest xxx

  5. Sunshining tips # 54:
    How to hide that you’re a bit mental:
    1. Get up at 6 every morning to make sure you shower and look good, no matter how shite you feel on the inside.
    2. Try your absolute hardest to maintain a good attendance, so you’re not conspicuous by your absence.
    3. Avoid mentioning the fact that you’re mental.
    4. It’s okay to be enthusiastic, just be careful about being arrogant. (I’m bad at this).
    5. Make sure you know where pastoral support is, or where you can hide or tone down if you can feel your moods overwhelming you.

    I wouldn’t be surprised if you do most of this already.

    And I totally empathise with the sill seroquel sleep cycle thing (even on a mild 50mg dose, I refuse to go higher because of how sleepy it makes me). Can you not get a slightly lower dose that means that you’ll get a bit less sleep, but you’ll still avoid the highs?
    I think your doctor sounds a bit pants.

  6. PS – sorry about the bizarre way that my comment looks like, I was doing it on my phone and have my head up my arse, clearly.

  7. Oh god, now I look like a stalker, I agree with Little Miss Sunshine, I snap my pills in half as I too am ickle, and therefore slur my words (let alone my typing) with normal peoples doses…. I know that is frowned upon by medical professionals but as far I know solid pills can be snapped (not crushed) and be ok, t’is only the ones with the special coatings on which must remain whole (well my GP knows I do it to some of my sleep meds and is fine with it). No more comments, promise

    • Comment away! I fuck my doses up and snap them, too. Being a midge is crap, makes you super-affected by medication, and the fecking side effects. I’ve had to stop nearly all the medication I’ve ever taken due to being bitchslapped by them.

  8. Wah!
    You remind me of Seve Ballesteros (golf,again( winks)) who in his golden years would strut around complaining about the bad lie and the immense difficulty of the shot and who would then stick it on the green to great applause,

  9. If I were you in your position I would do some of things already suggested. If asked about barriers in the past etc. I would say that I had a chronic illness and that for privacy reasons would rather not state what kind.

    Another possibility is to talk about privacy concerns with the instructor (alone) and ask how to handle it, given that you have a chronic illness that you dislike talking about.

  10. I will comment fully in due course but meanwhile sleep as well as you can and make sure you enjoy Brighton and Nuts &c tomorrow🙂

  11. Given a lot of this appears to be done on BLE, a forum public between you, your classmates and the instructors, I would go with talking to your instructors and saying that you are struggling to know how open to be. I highly doubt the instructor would mind and she may be able to help you work out how much disclosure is necessary for the course.

  12. Last first, I hope you have had some good sleep!

    Second – enjoy getting out of London to Brighton and performing May Contain &c (I hope you manage to record it – I am truly sorry that I have become so pathetically flat bound)

    Third – be kinder to yourself! It’s been a while since you were in full-time education so you’ve much to assimilate and habituated. (It’s just occurred to me that your class mates are also there because they did not get the GCSEs, A-levels whatever they now need, by definition they would not be doing Birbeck without some kind of possibly interesting history.) Yeah sure some have jobs and families, some of them might be there to escape from their daily lives

    You are a very good writer! It takes a long time to get societal recognition and even longer, if ever, to make a living at it but one day you will.

    To answer your question “How do I hide that I have am mentally interesting from everybody?”, I don’t know the answer (but then I am officially mental myself so of course know nothing about anything). The best short answer I can think of is to stay with the interesting bit and let the mental bit blog itself where it will. You do have a public persona (I got About 1,190 results (0.14 seconds)  on a search for “seaneen molloy” and I don’t think there’s anything to worry about. Neither would I worry to much about the woman who expressed distaste at “BBC and One in Four magazine”; you either misinterpreted or sadly and more likely, she’s the sort of person who should have nothing to do with anyone’s health and there are far too many of them around. Under the ‘be kinder to yourself, don’t beat yourself about medication – I am still learning, thanks largely to you and others how to live with 200 Seroquel (Psych now has me on a countdown from Prozac because it wasn’t doing anything for me) I do seem to be less dysfunctional now. The contents of your life story are entirely up to you and I doubt you’ll be cross examined and you know what they say about judgemental people… My particular experience of life stories is rather painful – the production of one was the core part of the 12 Step rehab (alcohol and cannabis) programme I did a couple of years ago. In the event, I was ejected from the programme not because I hit someone, took all my clothes of or even relapsed – pant pissing irregular zero tolerance breath and piss tests – but because my daily diary was not ‘fully open and honest’, so the group decided I must be hiding something really awful like rape or murder or incest. Guess what it was but please don’t tell anyone? I was passive aggressively dumb insolent because while I freely admitted to being an alcoholic and addict, I was scared witless to admit that I am mad. It has taken me more than 40 years to realise that and start doing something about it rather than just suffer mostly silently. I am sure I have been commenting for far too long: to use the old drunk’s adage, take it a day at a time. Now nearly 10/10/10 – enjoy Brighton!
    Be yourself, be happy and be as representative (or not ) as you please, there or anywhere.

  13. I finished my undergrad spring ’09 and – because I went rather publicly mad – most everyone in my department knew all about it. That was okay but it did result in a lot of unsolicited advice and some oddness, mostly from professors. When I started my master’s course this time last year, I decided I would keep my mentalness to myself mostly because I just didn’t want to have to talk about it on a daily basis; I wanted to learn without the distraction of explaining myself.

    When I wasn’t feeling well and needed to explain it somehow, I just said that I had a long-term, chronic health problem and that it was acting up. Then, if anyone pressed me on whether I was getting the appropriate treatment or what have you, I could just say yes, thanks. There was only one person who pressed me to tell what my illness was – I told her I didn’t like to talk about it and that I was mostly managing just fine, which actually stopped her enquiries. No one else asked me to elaborate, assuming instead that I’d rather not talk about it. It worked really well.

    I did eventually talk to some of the people on my course about it but I talked to them because they had become my friends, which is different.

    The main thing that helped me get through my courses when I’ve been ill is just to continue to show up, even if I’m not entirely prepared or my hair is dirty or what have you. If I can’t get myself to do that, then I know I’m too ill to be taking classes.

    My mentalness started while I was in school and I speak from experience when I say that university level courses are easier to deal with than school whilst ill, mainly because all of the people you’re dealing with are adults and they will all treat you as an adult. That took me quite a while to figure out, obvious though it seems. It took me even longer to trust my own authority on whether or not I could do something and what I wanted or did not want to do, but that’s another story.

    Good, good luck on your course. It’s great that you’re doing this and I hope that you figure out your comfort level soon!

  14. I once took a college course in electronics: I was on stellazine at the time and kept falling asleep in lectures. One of my lecturers used to call me ‘Sleepy Savage’, perhaps he thought I found his lectures incredibly boring and took it personally. Only one of my fellow students worked out I was on medication (he’d been on it himself and was quite understanding). The others thought I was working nights or something. At the end of the course I passed with a triple distinction and star passes, top of the class, highest grades possible, they put me in the prospectus for the next year.
    I guess your fame may affect your anonymity, but you’re brave and intelligent and in the end I think you’ll show them all what mentalists can do whether they know you’re one or not.

  15. It’s biological. Accept it. Or don’t. I know this because I have been diagnosed. I’ve gone through years of therapy, years of going on and off my meds, years of spending sprees, years of some really great highs and some very ugly lows. You have a remarkable gift. I believe you know this.

  16. Does your school have a health centre with a psychiatrist?

    If they do, that could be an option for seeing a psych or even a GP and talking to them about what you need.

    I was really scared about starting school after being in hospital this summer…. I was …am …terrified something will go wrong b/c well I’ve been in and out of school for 7 years, every time the crazy shows up and I’m gone by december. My mood dropped really low in september and suddenly I wasn’t capable of taking my 3 classes anymore…. it is embarrassing…now I’m only taking one (badly) and OSAP (ontario student assistance program) wants not only the loan they gave me back, but also the grant for low-income families, and the disability grant (which is bullshit). Anyways that was a long way of saying I relate to the fear of fucking things up via crazy.

    And yeah I agree with Lola, no one has to be miss anti-stigma all the time…. that’s just exhausting.

  17. Don’t think I can add anymore advice to whats already been suggested. You could just be “creative” about where you’ve been😉 and who knows what some of your other classmates have been through. I bet you’re not the only mentalist😉
    Think you’re doing a grand job Seaneen and entitled to keep parts of your life private. Think Lola has some good advice!

    x x x x

  18. I’m sorry, this is off topic, but I’ve been reading this blog off and on (as access to internet access allows) for a while now, so there are parts I have missed and haven’t had the attention span to go back and read through – namely, the part where the diagnosis went from BiPo to BPD. Are there specific posts that I can read about how this happened? I’m curious because I’ve had the same issue with BiPo v/s BPD. My current diagnosis is set on BiPo, but I wonder. I tried looking back through the blog, but I haven’t found any specific post where you talk about this.
    As for the current topic, I always found/find it helpful to let people know up front about my mentals, because it usually comes out eventually anyway. Trying to hide the mentals is just damn exhaustive, as well as trying to be “miss anti-stigma” as the person previous to me pointed out. There’s got to be a middle mental ground.

  19. (hugs ) to u. Your very insightful and self aware . can your social worker refer u to a new pdoc? Not sure how it works for u guys (im from aus) its funny i was put on big doses of seroquel, no side affects for me except i had a major worsening of mood at that time. but we all react differently. Or at least i do!:/ best of luck seaneen.

  20. I tend to disagree with what some people are saying…
    It’s very easy to be open about your mental health problems when writing for a magazine on MH, or writing for the disability section of the BBC, whats hard is being open about it in real life.

    Being open about MH problems in your day to day life is what changes peoples opinions. For example, I asked a friend to come with me to a psychiatric appontment – and he commented how everyone in the waiting room looked so ‘normal’ – despite the 1in4 campaign. Its only when people get up close to the issues it hits home – hence why people who’ve had a close friend or relative with a chronic MH problem tend to be more understanding than those who’ve never *knowingly* encounted someone with it.

    As for whether to ‘disclose’ – every situation is different, there’s no way of knowing what peoples reaction is going to be before hand. Its daunting and you just have to deal with it.

    As for tips how to deal with an intensive course and a MH problem:

    1. Make sure the course leader knows.

    2. Turn up as much as possible – unless you’re going to actually fall-asleep when you get there or throw up, turn up. It doesn’t matter if hardly anything goes in – your presense will speak volumes, you’ll recieve course material and oral information, and stay in the loop.

    3. If you cant turn up contact them ASAP – I cant stress this enough. A person taking 3 weeks off and remaining in contact and a person going AWOL can result in 2 entirely different outcomes when the only difference is a few phone calls.

    4. You’re there to work, not socialise – dont give up if people dont accept you, as you’re there to better your life not make friends.

  21. I hope the gig went ok Seaneen, and travelling down to Brighton went ok too in the end, I saw your facebook update! bless you, hugs x

  22. Hey seaneen. I’ll be receiving Disabled students allowance soon! You can get a mentor/book grant (mine was £200!)/dictator for lectures/laptops/software.

    I think the best part will probably be the mentoring… I can’t wait to start.

    Apply for it soon, if you go for it, you need to have a need assessment and then student finance spend ages after that dealing with you.
    So the sooner the better!🙂

  23. well done for taking up education again. I’m in my second year of a law degree. just managed to pass last year mid manic episode but a mixture of chlorpromazine, seroquel, lamotrigine and zopiclone sorted me out. however since I started a week ago I seem to be getting increasingly hypomanic to the point I took charge of a group of people and introduced myself infront of about 200 people. so not me. i guess the fear of embarrassing yourself in front of peers or them finding out you’re not so tight in the screw department is real among most mentally enhanced students. as for dsa. I’ve just been approved and have assessment on 8th November. fingers crossed I get a shiny new macbook🙂
    take care
    L
    x

  24. Having had to disclose various mental health disorders to various University courses (I’ve been on three and haven’t yet completed one…) because I’ve either a)needed extensions or b)had to leave, my advice would be to at least let your learning support (or closest to) team know.

    My experience with them, by and large, has been good, most of them having had experience with Bipolar/Depression/Anxiety etc etc before. Yes, it probably means seeing someone once a week for either academic or emotional support, but trust me, it helps one hell of a lot.

    Oh, and as horrendous as the forms are, apply for DSA. You get free laptops (plus funding for help, of course…).

    With regards to people on the course, there’s no real reason to tell them unless you actively want to. Personally, I have no worries talking about it, so people may judge me as they will, but it tends to be on a more ‘only if they ask’ basis. I’m in a similar position in that most of the people on my course have actually been doing something with their lives for the past four years, rather than joining and dropping out of various universities. They have, however, been pretty intrigued by my seemingly sporadic choices of course, and one guy had an actively positive response to ‘Yeah… I’m Bipolar’ which made a change from the usual ‘Oh!… Right…’.

    I hope all is going well, best wishes…

    Kat
    xxx

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