#9 My Kids Are Just Like Me? Can't I Pick Somebody Else For Them?

My recent post - you know the one in which I complained that NHS staff need to be more accepting of people with mental illnesses? - has got me thinking (I can't type that without an annoying Carrie Bradshaw voiceover in my head. Gah!).

Has this illness always affected me? Is the 'illness' just the way I am? Should my condition excuse my flaws? Do I look for reason in every negative experience because I'm bipolar? Do I use too many question marks?

Earlier today, walking home from a children's party (yes, a children's fucking party people, I am that lame), trying my very hardest not to cry like a teenage girl who's just been dumped in front of all her mates, I wondered whether I'd be helped out by wearing a t-shirt bearing the slogan 'I'm not rude, I'm just bipolar!'. See, during the course of said under 5s shindig I was entirely unable to communicate with the people around me. Partly because I didn't know many of them, partly because some of those I did know I have little in common with aside from having children of similar ages, but mostly because social situations are very much not my bag.

I imagine much of this discomfort, along with the shaking hands, racing heart and slight sweats, comes from what has been coined by my local friendly psych as Social Phobia (and possibly the result of one bottle too many last night). But, I wondered on my little meander, hiding my face behind my hair, whether that meant that I'd always been phobic. See, I've never in my life, even as a child, found it easy to speak to people, to make small talk and deal with people that I don't know or don't like. Can you be born with a social phobia or is it something that develops? And if it's something that develops over time does that mean that I'm not in the least phobic, just rude and uncommunicative?

One of my abiding memories of sixth form college is of a girl who I'd got to know over a period of time telling me that she was scared of me when we first met. I was sarcastic and grumpy and she thought I didn't like her. Wrong! The fact was that I seemed grumpy because, well, that's how my face is, and my extreme reliance on sarcasm is something that provides an effective cover for nerves. Ever since that conversation I've realised that I give off this air - I'm unapproachable and aloof, even if I don't mean to be. Thing is I can't switch it off no matter how much I want to, no matter how much I like you and would actually love to be your friend.

Ok, so there I am, trying not to seem rude at this party and I look at my kids. While everybody else under five foot is screaming around like gremlins on e-numbers *my* offspring are sticking together, not really talking to the other kids, not really joining in with anything. They're me.

As any parent can probably well imagine, on realising this my heart breaks in to a thousand little pieces like somebody just punched it really hard and, wouldn't you know it, it's made of paper thin glass. My beautiful, intelligent, kind and loving and loyal and funny kids, who will make the most incredible friends for any other person with an iota of sense, are afflicted with this same pathetic inability as I am. And whether it's nature or it's nurture it's all my bloody fault.

Is my phobia or otherwise hereditary or have they seen me behaving in my bizarrely aloof way - despite all my best efforts to put on an air of confidence in their presence, to make friends and to encourage them to do the same - and imitated me?

Perhaps that t-shirt would come in handy after all, at least my excuse for being so weird would be out there. And folk might be less inclined to judge me and more inclined to take pity on my situation. At least the whole 'waiting at the school gates' (the perennial highlight of the day for the middle class mum, the equivalent of having my fingernails plucked out one by one for me) would be less agonising. And then of course I could leave it to the kids in my will too.

Now, don't get me wrong, I don't hide behind my bipolar or my social phobia, I don't use it as an excuse to be anti-social or inadvertently rude, at least not to others - it's a fail safe excuse I make to myself, 'I can't help it, it's an illness'. And I have never found myself with a lack of friends, I want to be absolutely clear on that, I have been lucky enough to have a group of friends, incredibly supportive, incredibly faithful friends, who have been with me through thick and thin since I was at school, some of them from age five. And indeed since my bipolar diagnosis I've found myself with a whole new group of wonderful women around me who have been very understanding and non-judgmental, not to mention ridiculous fun even on those days when I can't see a reason to get out of bed (you know who you are). So I know that my kids will find their place in a group or in groups. But I still can't help but wish that they could do what I can't, that they could have that thing that makes it simple to be everybody's mate, to have those meaningless conversations or simply smile and say hi without feeling as though they might collapse with a heart attack, to speak confidently without turning a shade of red more normally seen on a pillar box.

I hope that whatever friends my children do have as they get older will be able to do for them what those select few who, whether they really understand my issues or not, do for me - help by introducing me to their friends or by sticking with me when I'm alone in a crowd. Because in those moments, when my heart is about to pound out of my chest, when I'm faced with the social situation firing squad (currently those braying mummies who pretend class doesn't matter when it so clearly does - proof that they have none), those friends are as valuable as diamonds and as brave as any superhero to me. And knowing that somewhere out there those people will exist for my children provides just a little bit of superglue for my splintered glass heart.

Read more about Social Phobia/Social Anxiety here

♯8 We're Mad, Not Stupid

Let me start by getting one thing straight. I don't hate the NHS. In fact, Mr Beven, I adore it. I know, I know, it's a hugely flawed system but it can't be denied for a moment that the NHS has saved more lives than it's ended. How can I not be grateful for the defective but wonderfully utopian invention that allows Britain's people, regardless of class, race, religion or gender medical treatment at no charge.

Indeed I could write a whole post defending the NHS, weighing up arguments and talking about it's good and bad points. But I'm not about to.

No, this post is about something entirely else.





Last week, Tuesday if I remember rightly - maybe Wednesday - Elinor O'Neill was taken to hospital having experienced numerous black outs.

Elinor is a friend of mine. In that we know each other. In that we met once. In that we're friends on Facebook and have exchanged 'tweets'. In web 2.0 terms we're bosom buddies. And we have things in common.

Like me Elinor is a young, female journalist living in Market Harborough. And like me Elinor is bipolar. We're even under the same consultant at the nutter unit. There's coincidence for you. However, Elinor is much more proactive than me, she even has her own mental health supporting charity thing going on here.

Now, as I think I've made clear, Ellie and I are not close, I don't know what kind of personality she has, I can only make assumptions based on my own experience of the devastating lows, ultra-productive, sometimes unhealthy highs, extreme obsessiveness and, perhaps most pertinently, the awful paranoia that comes with bi-polar and similar depressive issues. But what I can tell you is that, like any of us suffering (I hate to refer to it this way as I, for one, don't feel that I 'suffer') under the big black dog and his bouncing yellow labrador counterpart Ellie is a perfectly normal, sane human being who can make decisions, work, socialise, get up in the morning and wash herself, dress, eat and drink.

She just has this something else that sometimes, when the wind blows a certain way, when the situation is the right combination of bad and sad and painful, pushes her in to a deep dark abyss with horribly slippery sides and no ladder.

And what could be more bad, sad and painful than being carted to hospital, imagining (as those of us with overactive imaginations never mind mental illnesses, do) that you're dying of cancer/brain hemorrhage/heart attack?

While Ellie was in hospital I was at home, following her tweets and becoming increasingly concerned.

The overwhelming feeling I had from reading her Twitter feed and Facebook status updates, which became increasingly difficult to understand, angry and panicked, was that Ellie didn't feel that she was being listened to. And that she wasn't being listened to because she was diagnosed with a mental illness.

I know that feeling only too well. It's a hopeless, beaten down feeling that makes you think there's nothing to do but just give up, nod and smile. It's a feeling I've had not only when in the presence of medical professionals but friends and family too.

Of course, only perhaps fifty years ago both Elinor and myself would have been hooked up to electrodes and had sense shocked in to us. We would have been locked away or been put in a position where we'd have felt there was little other choice but to what I like to call Do A Sylvia (I mean, honestly: we're writers, we're mad, we're female OF COURSE we'll follow the Plath path).

No, we're lucky in many ways that the understanding of mental disorders and bipolar in particular has come so far in recent years. However, Ellie's situation proves that we still have an awful long way to go.

You see, during her time in hospital - first in Kettering General Hospital and then at the Brandon Mental Health Unit at Leicester General - I can't help but get the impression that Ellie just isn't being listened to.

Her updates give the crushing impression of somebody who just wants to know what's going on, who just wants to go home or even just be reassured that everything is going to be ok.

There it is, right there, that tendency we all have to treat those with mood disorders with kid gloves, as we would children. I'm not saying that the doctors and nurses are wrong in keeping her where she is - indeed perhaps their decision is the right one, perhaps she needs to be watched 24/7 for her own safety or for that of others, it's not my call - what I'm saying is that Ellie, and all patients with mental health issues under medical care, residential or otherwise, need to be kept well informed of their situation.

Indeed those of us with these problems need additional reassurance and care, more time spent explaining the whats, whys, whos and hows.

Imagine if you will, the inside of, for arguments sake, my head. I know it isn't pretty but there you have it.

If I could paint a picture of my mind it would be full of dark, impenetrable corners. Corners with those 'abandon hope all ye who enter here' signs hanging over them. Now ignore that bit there where Robert Pattinson, Michael Cera and the singer out of Friendly Fires are begging me to marry them - pathetic beasts that they are - and note the wide, open spaces of Don't Know and Am I Doing This Right? and Everybody Hates Me and Wishes I'd Die. Observe the Scaredy Cat Steppe; the bit that prevents me from picking up the phone when it rings or talking to perfectly reasonably looking people in the street. East of that is Paranoia Peninsula; that's the bit where everybody is lying to me and people are pretending to be my friend and, oh! it's the bit where I'm convinced that the doctor only diagnosed me with bipolar to get me to stop coming in and annoying him.

See what I mean? You're all absolutely right, we do need to be treated differently. But the thing here - the BIG thing - is that we need more information, more time, more reassurance. And it seems that this is precisely what is lacking in Ellie's care, it's certainly what's been lacking in much of mine.

In fact if there's one thing which could be said to be lacking, in every part of the mental healthcare system it's empathy. It's that thing that makes sure that you've got all the information you need, knowing that there's a good possibility that you're too scared or too stubborn to ask. It's that thing that says that perhaps when it comes to mental health patients it should be NHS staff that do the running, not the patient.

With this in mind I present you with two short cautionary tales, starring yours truly.

Cautionary Tale One:
When I was first diagnosed with a depressive disorder I was referred to a CBT counsellor. From what I can tell this is an hour of me crying while someone looks on sympathetically.

I missed an appointment. One measly appointment because, dullard that I am, I plain old forgot to go.

I haven't been back since. Why? Quite simply I'm terrified of the phone. I hate making calls, I hate answering calls. I have no reason, I just do. So I never made another appointment. The medical centre never made another appointment. The doctor never asked about it. Anybody else - friends for example - I've told that I didn't think it was up to much, that CBT. But now you all know the truth: I was too bloody chicken to pick up a phone and say 'sorry, can I make another appointment.'

Cautionary Tale Two:
A few short months ago, newly diagnosed with bipolar, the consultant psychologist upped my dose of Duloxetine - that's the stuff that stops me going proper insane. So I got the lovely new dose, started taking it and, my wasn't everything rose tinted?

On schedule I returned to the chemist for my re-fill. Except there's no repeat prescription. They're confused because they know I need one, I'm confused because I definitely had a new prescription and...arrrrrrrrrgggggghhhhh no drugs! no drugs! no drugs!

Now lovely chemist does her best but, as it turns out the GP knows nothing of this new prescription. So I go to the GP, wringing my cap in my hand to ask the always cheerful receptionist (please note sarcasm) for 'some more drugs please m'am'. She rolls her eyes and says, 'name?'

I tell her and she rattles about on her PC before dead-eyeing me, 'Duloxetine?'

'yes.'

'60mg?'

'No, the psychiatrist upped the dose to 90.'

'It says 60 here.'

'Oh. Ok.'

It was at that moment that, without the medication already in my system making me 'normal' I'd have walked away and never taken any more pills ever again.

'Have you had a letter from Dr V?'

'Well no, if we had we'd have updated the system wouldn't we?'

Here a nice receptionist trained in understanding the nuances in mental illnesses might have kindly sat me down (with a cuppa?) and called the specialist's secretary to chase said letter confirming the new prescription.

But no, instead after some huffing and puffing (her, not me) she presented me with a scrap of paper with her fax number on it.

'Get them to fax us the letter and we'll issue the prescription.'

'Ok, do you have the number for Dr V?'

'No.'

At home I found the number, steeled myself and made the call. The rather more kindly receptionist promised to find the letter and fax it to the GP's surgery.

Days passed and nothing happened. Eventually some, or at least part, of the sorry tale emerged to the husband, AKA Mr H, who immediately burst in to action. He likes the phone, nobody spawned of my mother in law's loins could fail to like that amazing piece of communicative technology.

And BOOM! I get my meds.

I'm lucky. I have a supportive network of family and friends. I have the endlessly patient Mr H. I have my best friend Mrs T who also happens to be a professional psychologist. I have parents and a sister and parents-in-law who just take my general nuttiness in their stride and who I know I can call on when things go wrong. I have a friend called Big Mad Rich who is my guru of nuttiness because he was maaaaaad a long time before I was.

In short, I have people around me who notice when things aren't right. People I can turn to. But still I need help from the professionals, from the people who KNOW about my condition, who have some idea of the things that aren't going right in my head.

When Ellie was taken to hospital she didn't seem to know who to turn to. She was reduced to begging on Twitter, in front of hundreds, possibly thousands, for help because she was afraid of what was going to happen to her. She was afraid because she wasn't given the information she needed. The nurses and doctors first at Kettering and now at the Brandon Unit didn't have time or perhaps patience. She needed to be reassured and she wasn't.

The point of this post? I've nearly forgotten, it's ended up such a lengthy one full of admissions and truths and sheer mentalness.

The point is this, NHS staff, from consultants right down to receptionists need to learn to treat people with mental health disorders differently. Because we ARE different. Things that normal people take in their stride can be like climbing Everest to us. NHS staff need to be aware of that fact, they need to find a way to ensure that they recognise when we need to be given a little extra understanding. They need to make sure letters and appointments and prescriptions don't go awry, falling down the back of Anuerin's sofa. They need to make sure that in patients are informed of every single aspect of treatment, that promises made are kept or not promised at all, that we're seen in a timely manner.

In 2008 the female suicide rate was 5.4 per 100,000 people. Perhaps some of those women died because they didn't get their prescription filled on time. Perhaps they felt ashamed by their inability to deal with a simple task. Whatever the reason it's got to be accepted that with better understanding of mental illness throughout the NHS and beyond, with more careful treatment of patients on a case by case basis some tragedies could almost certainly be avoided.