The Uncomfortable D or The worst Six Things about Living with Mental Illness – Part 2

The following post is part 2 of 2 written by a friend of my about her experience of living with a mental illness. For more info about mental health visit Beyond Blue or Black Dog Institute. Read Part 1 here

Part 2

The drugs don’t work (at least not as well as they should)

To drastically misquote Douglas Adams – the brain is complex, you won’t believe how ridiculously, mind-bogglingly complex it is. You think a Sunday morning crossword is complicated, that’s peanuts compared to the brain.

Not only that, but every brain is different – development, experience and those pesky genetics cough up random variations, any of which might make those squishy grey lumps process drugs differently. In short, it’s not just corporate greed that has forced thousands of products into the market – the simple truth is that what works for one person might have no effect (or worse) on another.

Let me be clear, drugs do help a lot of people, I myself probably wouldn’t be alive if I hadn’t gotten treatment, but it can be a long process – mixing and matching different combinations of drugs until you find a cocktail that works, preferably one with few side effects – it can (and has in my case) take years.

But the key word above is ‘treatment’ – because when we’re talking about mental illness we’re not talking about a cure. There’s no tumour to remove, or bacteria to flush out – no quick fixes or easy answers – most patients will be on medication for years, even decades. Decades of taking the same pills every day, no matter how sick you are, or how sick they might make you. Doctors have a word for this – ‘compliance’ and mental illness has some of the worst compliance issues of any disease.

Taking a pill (or even a dozen) every day might seem like an easy thing – but what if you’re on holiday, and forgot to pack enough? What if they make you sleep 18 hours a day? What if they don’t seem to be working, and they taste funny and what’s the point anyway – you’re a horrible person who doesn’t deserve to keep breathing? Add that to a turbulent home life and poor social support that afflict so many sufferers and you’ve got a recipe for non-compliance.

The actual disease part

Yes. This is the part where I straight up bitch about how hard my life is because of my disease. Feel free to ignore it and then comment about how I’m making my illness out to be so much worse than it actually is. You won’t be proving my first point at all.

Let’s start with the physical. About six years ago they put me on lithium, which screwed up my thyroid (the gland that regulates metabolism). I’ll be on thryroxine replacement for the rest on my life.

And then there’re those pesky side effects. Over the years I’ve been on drugs that have made me put on weight, sleep 18 hours a day and made me so dizzy I had to check in to hospital. And it’s not like just stopping the drugs will help – you have to be weaned off many anti-psychotics, or the symptoms get even worse.

It also affects my finances. I haven’t been able to hold down a job for years, and finding a boss patient enough to deal with someone like me would be difficult even with a full CV.

I pay about $100 a month on drugs, which might not sound like much, but on a fixed income, and with the expensive doctor visits, it adds up – even without Tony Abbotts’ threatened austerity measures.

But none of those are anything compared to the mental issues. I have bipolar two manic depression, which for me consists of massive depressive episodes interspersed with random periods of moderate lunacy – I’ve never walked the streets naked singing My Sharona, but I have dumped a slushie over my head on a freezing day. I spend at least one night a month crying myself to sleep, have days when I can’t get out of bed, and had a panic attack at my sisters’ wedding that meant I couldn’t make it to the reception (am dreading explaining that to any future nieces and nephews). I am, frankly, a mess, and despite being better this year than I have been for the last three, I am still at least six months away from being able to support myself.

Yes, my life sucks, and I wonder everyday why I don’t just kill myself, but I don’t because…

I can’t trust my own brain

About eight years ago I was a medical student. I loved being a medical student. I love medicine. If I could do anything in the world it would be a Doctor. And then I had my first major manic episode.

Out of the blue I quit medicine because… I have no idea, but at the time it was a logical, sane and completely rational reason. I have a lot of logical, sane and completely rational reasons – I had one when I stopped taking all my drugs, when I tried to take my own life, when I bought a puppy with my very last pay check.

My brain is sick, so all my reasoning is flawed – I can’t trust anything that comes out of it. I can’t make snap decisions, because I know that tomorrow might make everything seem different. I can’t argue with people, even if I think they’re wrong, because I know that my logic might make no sense whatsoever. I have to constantly question everything I feel about the world, because what’s in my head might not match up with reality. Can you imagine what that’s like? To never be sure if you’re perfectly sane or off-your-head-crazy? And I don’t even have the hallucinations that other sufferers have to deal with.

So I guess it could be worse. And for many others it is. But the question remains, do I publish this under my own name, or get a friend to put it up for me? Will people read this and shun me, or employers check on it and decide I’m not worth the risk? A cancer sufferer wouldn’t have to worry about this, but I have to, because mental illness isn’t just a disease, it’s a plague that infects everything you do.

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The Uncomfortable D or The worst Six Things about Living with Mental Illness – Part 1

This week is Mental Health Week. Despite the fact that 1 in 5 Australians will suffer from a mental illness in any given year, there is still far too much stigma surrounding it. 
The following post is part 1 of 2 written by a friend of my about her experience of living with a mental illness. For more info about mental health visit Beyond Blue or Black Dog Institute

The Uncomfortable D or The worst Six Things about Living with Mental Illness

The Stigma

So you’re having a good day, and then, out of the blue, a friend tells you they’ve got cancer. How do you respond to that?

The correct answer, for all you sociopaths out there, is with sympathy. As a halfway decent friend you’ll support them – bake cookies for them, come visit them in hospital, back them up as much as you can. After all it isn’t their fault, – cancer can happen to anyone.

Now imagine that same friend told you they had a mental illness. Would your attitude be the same?

My guess is no. If you’re like most people I know, your response is going to be less ‘Oh my God, I’m so sorry. What can I do?’ and more ‘Wow, this conversation just took a really awkward turn.’

Why is that? Why does having one chronic, life altering and (at times) deadly disease get you sympathy, while admitting to the other gets you shunned? And having a mental illness will get you shunned – not as badly as in the past perhaps, but even today admitting to depression, bipolar or schizophrenia in a job interview is a sure-fire way to never hear from them again.

Live with mental illness, and you’ll find yourself splitting the world into two categories, those who can know and those who can’t. The difficulty is in knowing which is which. Tell the wrong person and that’s the end of the conversation and possibly the relationship as well. I try to be an honest person, but if a stranger asks me why I don’t work, I tell them I have chronic fatigue.

But why do I have to lie about it? – Asks the small green alien who’s right now reading this from Rygel 12. You have a disease, and surely one disease is no worse than another. Well, life form from another world, I lie because here on Earth, admitting to a mental illness is tantamount to admitting that you regularly talk to small green aliens from the planet Rygel 12. Tell people that you’re mentally ill, and suddenly that’s all they can see.

I can’t tell you how much I hate being defined by my disease. I’m crazy, but I’m also a good flatmate, good sister and occasionally a good cook. I’m crazy, but that doesn’t make me any less of a person. I am more than my messed up head, so don’t judge me on it. And don’t judge me by what shows up on the news, because if you judge any of us by that the Rygelians will wipe us out for the good of the galaxy.

The Attitudes

Someone once told me that mental illness is the rape of the disease spectrum. After being outraged and offended, I actually came to realise that they had a point. Mental illness and rape are the only cases in their respective fields where it’s acceptable to blame the victims.

Yes, I know that’s not always true. Decent, rational people everywhere recognise that a woman wearing a short skirt is not asking to be raped, that the crime is always the fault of the criminal, and that the perpetrators should be castrated with a hot poker and a spoon, but we’re not all decent people, and we’re certainly not always rational.

With mental illness it’s the same – the responsibility for the disease is placed, not on the bastard son of circumstance and genetics, but on the sufferers, as though we’re sick because of some weakness within us, or because we don’t have the right attitude.

I have been told (or yelled at, to be honest) to just get better, to get over it, as if my disease is somehow under my control, as if I’m just pretending, or doing it for the attention. For what other illness would that attitude be acceptable? How many cancer sufferers do you know get told that they’re not trying hard enough?

‘We all get sad sometimes – I just don’t dwell on it,’ ‘There’s plenty of people out there who have it worse than you,’ ‘You’d be more loved if you made yourself more lovable,’ – these are all phrases I’ve heard, from people who are genuinely trying to help, mind, and all fundamentally fail to understand the problem. I’m not just sad – my brain has forgotten how to be happy. People might have it worse, but I’m feeling pretty bad right now. I need to be loved, because I no longer love myself. 

The Loneliness

Earlier I mentioned visiting friends in hospital, something that I hope most have you have done at some point, or you will do if someone you know gets sick, (if you know someone who is currently sick consider this a hint). Hospitals are unpleasant places at the best of time, and seeing a friendly face really helps you get through it.

I mention this because, back when I was first diagnosed I spent two months in a mental hospital, and other than my magnificent family I was visited by exactly one friend, once, and that hurt more than all of the other stuff that was happening to me.

And that was back when I actually had friends, before I got put in the ‘too hard’ basket because I kept skipping meetings, and my agoraphobia got so bad I couldn’t leave my house.

Do you have any idea how hard that is? To struggle to relate to people who can’t really understand what you’re going through, and frankly are too put off by your illness to even try? And it’s not like I’m not a social person. One day I’d like to meet someone, have a family (although the thought of passing this onto my kids is terrifying), but the way things stand it feels like that’s never going to happen. My disease pretty much guarantees I’ll be miserable for the rest of my life, do I have to be alone too?

(to be continued…)