clinical trials

THIS is a guest post written by Martha Roberts, a journalist and mental health blogger in the UK, who writes the blog, Mentalhealthwise. Martha is on twitter @martharoberts01. Thank you, Martha.

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‘So when can you come off your medication, now you’re feeling so much better?’, someone asked me recently.
‘Well…um, never,’ I replied.
‘It’d be good if you could come off it at some point,’ they said.
‘But I’ll always have bipolar – why would I want to do that?’ I said, trying hard to keep my cool.

I know such questions are asked out of concern and kindness – with a bit of misunderstanding thrown in – but they still get me thinking, ‘Will I always have to explain this?’

Such conversations remind me of how people with conditions like mine (I have mixed affective state, a type of bipolar) still have so much further to go to proper understanding. And one of the big areas that needs to be talked about is medication.

Jennifer Lawrence, who won Best Actress at the Oscars for her role in Silver Linings Playbook (a film about bipolar and mental health), recently said: “It’s just so bizarre how in this world if you have asthma, you take asthma medication. If you have diabetes, you take diabetes medication. But as soon as you have to take medicine for your mind, it’s such a stigma behind it.”

I think I might write this on a postcard, laminate it and dole it out when I’m spent for explanations and ready to tear my hair out.

I think I’ll be handing it out a lot, and it’ll have to be laminated because I’m sure some people will want to tear it up in front of me as I warble on about why I agree with this view. That’s if responses to Rachel Whitehead’s recent article are anything to go by.

Rachel, who works in the Rethink Mental Illness press office, wrote a thought-provoking article in The Independent recently about the demonization of mental health medication.

“What I find worrying,” she says, “is the automatic assumption that a rise in prescriptions, or someone taking medication for a number of years, is necessarily A Bad Thing.

“Medication for mental illness can save lives and give people the stability they need to survive. That may be for a few months, it may be years. While no one wants to be on any kind of medication unnecessarily, for some people, it’s the best option.”

It seems her article has opened floodgates, with one person accusing her of proffering a ‘pro disease model and pro the pharmaceutical industry’, saying that psychiatry, which prescribes these drugs, is based on ‘fear, fraud and force’ rather than ‘health or ‘cures”.

However, others agree with her. One says, ‘I’m so fed up [with] the anti-medication brigade out there’ and another concurs, saying, ‘This medication works for me…I have struggled with this diagnosis for the best part of my life and there were many people telling me not to take [it]…It’s easy to talk for those who have no idea of the suffering of the condition.’

I agree with this. I went on meds after years of ‘talking therapies’ failed to do the trick. Talking therapies definitely have their place – few people seem to dispute that. But drugs have their place, too.

For me, these drugs have been truly health-restoring and life-changing. Of course, these are my views and my experiences. I completely accept that others probably have different ones.

However, it seems to me that if mental health drugs work for you it’s verboden to say so. I want to challenge that (and no, I am not being funded by the pharmaceutical industry) – the enduring view that psychiatric drugs are all ‘bad’ is the stuff that stigma is made of.

It seems it’s permissible to stand up and say, ‘These drugs gave me hideous side-effects and didn’t work for me’, but somehow contemptible and collusive (and suggestive of being ‘in the hands’ of the pharmaceutical companies) to say the opposite, to say, ‘They really helped’.

Why not be allowed to say medication has worked for you without it being implied you’re some kind of misguided prescription junkie?

Listen, I’m not saying mental health drugs are always appropriate – for example, they may be more helpful where there’s a clearcut biological basis like bipolar or psychosis than for other mental health issues.

And I’m not saying my drugs are perfect. How can they be? I would imagine there are very few drugs that have no side-effects. Mine have plenty.

For starters, I now live a ‘Cinderella life’. Every day at 7pm, without fail, an alarm goes off on my mobile and the word ‘Meds’ flashes up, and I know that within two hours of taking said medication, I have to drop what I’m doing and run before I hit the decks (the drugs make me so drowsy you could poke me in the eye with a stick and I think I’d just roll over and snore).

If friends say, ‘Let’s meet up’, I’ll generally vote for an early rendezvous (note: mornings and afternoons are great…). If I take my drugs any later, I get a supreme ‘hangover’ the next day and feel like I’m wading through treacle until sunset allows me to sleep again.

I recently read that Carrie Fisher, actress and fellow bipolar gal, said of her daily drugs regime: “This constantly puts me in touch with the illness I have. I’m never quite allowed to be free of that for a day.”

This is how I feel, too. No matter what I’m doing, no matter how ‘normal’ the task or action I’m in the middle of, the alarm is like a bump back down to earth, reminding me that there’s something different about how I now live my life.

If I don’t take the drugs at all, I feel fine (presumably they have a half-life) but immediately have a shocking night’s sleep where my mind races and my fingers fidget with imaginary touch-typing or piano-playing. In other words, how it always was before meds.

I then worry this will set me on track for what I call a bipolar depressive ‘wobble’ (my drugs have also made me realise how I spent years sleeping fitfully, despite regular attempts at ‘sleep hygiene’).

The drugs also mean I’ve put on a bit of weight, and I can’t drink, smoke or have caffeine. I have to have quarterly ECGs because the drugs could cause prolonged QT intervals in my heart which could lead to my heart just stopping. I also have to have regular blood tests because the drugs are known to raise blood cholesterol which could put me at risk of heart disease. Oh, and I may get cataracts. Great.

I guess this is where the pharma critics find their fodder – ‘How can it be good that this woman is subject to all these side-effects?!’ I understand the anxiety. I also understand that prescribing can be about trial and error, and I can see why people – doctors as well as patients – find this unacceptable.

It’s true to say, too, that psychiatric meds have acquired something of a bad reputation over the years, partly due, it’s true, to inappropriate or indiscriminate use; for example, mass use of benzodiazepines in the 1970s, leading to addiction. Many people also feel that ADHD medications have been over-used in children, especially in the US.

As Dr Ian Drever, consultant psychiatrist at The Priory Woking, tells me: “In time-pressured NHS environments, prescribing a medication may be an easier and more readily-available solution than providing long-term and resource-heavy psychological work. So against that background, it’s possible to see how many people are wary of medication, and see any proponents of medication as being ‘in the pocket’ of big pharma.”

Last year Dr Ben Goldacre, author of The Guardian’s ‘Bad Science’ column, published Bad Pharma, a book in which he describes how there are serious ongoing problems in the pharmaceutical industry, in particular with clinical trials. He says important information from them is still being withheld from doctors and patients and that patients experience avoidable suffering and death as a consequence.

It goes without saying that this needs to change. Thank goodness Ben Goldacre, with his influential voice and dogged determination, is campaigning to do something about it.

But whilst it appears that challenging pharma companies in this way is vital for patient health and safety, it shouldn’t detract from the fact that some people, like me, appear to need medication and seem to benefit from it greatly.

I acknowledge that I was lucky that I found a medication and dose that appears to work for me pretty much straight away (I know many others aren’t so fortunate and take forever to get there, if at all). I’m also aware that the side-effects may come back to bite me in years to come.

In an ideal world it would be marvellous to find a drug that was side-effect free. And maybe, over the next few years, with more R&D by pharma companies who are well-placed to fund this, I may end up with one.

In the meantime, I feel it’s important to acknowledge, where appropriate, that for some people like me the drugs have affected me positively, too.

Before the drugs, I was up and down within the same day, or more precisely, within the same minute within the same hour within the same day. Mostly I was hideously depressed. I was sick and sad whilst also trying to mother, to work, to be a friend and to deal with difficult times. I feel I barely managed it. I don’t think it’s any exaggeration to say I felt like I was hurtling towards my own demise because I felt so unable to function effectively. I felt fractured and with no way of getting fixed, no matter how hard I tried.

And so, I may now be at risk of living a shorter life because of heart problems or other iatrogenic issues, but I’m hoping I’ll live longer than I would have done before meds because I am no longer feeling ill and broken.

It also means that I am better able to utilise therapy appointments because they are now constructive, working towards better ways of managing my condition – before, they were more about crisis intervention, with little space for true change.

Dr Drever, who specialises in depression, anxiety and addictions, says medication can “help to improve mood, or diminish anxiety, thus creating a foundation on which the psychological work can take place to maximum effect.” I agree – my meds and talking therapies are something of a ‘team’, facilitating wellness where talking alone was unsuccessful.

Even my daily 7pm alarm cry has started to become a welcomed interruption. It may be a reminder of my illness but it’s also a reminder of my wellness. It is constant proof that I have a diagnosis and am able to do something about it.

I’m actually one of the lucky ones, not a ‘poor sod’ who has been ‘dumped on medication’. I now have more constancy and stability in my life as a result of medication. In Rachel Whitehead’s words, meds for me haven’t been A Bad Thing.

If more people realised that they might just be a good thing, then maybe people would feel less freaked out by them and the stigma would start to fall away.

Now, where’s my laminating machine? I think I’m going to be busy…