Dying for a cure — (Online Opinion)

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Online Opinion

By Rebekah Beddoe

posted Friday, 23 February 2007

Wind blow me away
Rain make me solvent
With this world I cannot cope
With myself I cannot cope
Dream or death the only escape

I wrote these words in 1999. I’d been diagnosed with post natal depression and as part of my therapy I’d been urged to keep a journal. Two years later, I would begin to realise these words and others like them were not born of a naturally occurring mental illness so severe and unendurable that it would drive me to perpetually try and end my life. Two years later, I would begin to realise, to my sheer horror, that it was something else altogether.

I had been given the diagnosis shortly after the birth of my first and only child. After delivering the news, my GP referred me for an inpatient stay at the mother and baby unit of a general hospital: a place where I could get some respite, some counselling, and coaching with mothering. He also handed me a trial pack of antidepressant drugs – an SSRI (Selective Serotonin Reuptake Inhibitor) similar to the well known Prozac – explaining I would be given some more at the unit.

With no history of depression or any other mental illness I was reluctant to accept this diagnosis. I was even more reluctant to take the drugs. Sleep deprived, exhausted and teary, I was feeling overwhelmed by all that new motherhood entailed – but did that mean I was ill? “You have a biochemical imbalance in your brain”, the doctor told me, apparently resulting from a deficiency of serotonin. “All the drugs will do”, I was assured, “is correct this deficiency”.

With some further gentle coaxing at the hospital I soon came around to the belief that perhaps I was suffering a bout of mental illness with a physiological cause that would be readily corrected by medication. Though still a little uneasy that the conclusion had been drawn in the absence of any physical testing, I ended up welcoming the relatively quick and efficient relief I was promised this pill would provide.

Within days of taking this drug I was having disabling panic attacks. Not long after, yielding to an all-consuming and inexplicable urge, would start to self-harm. Confused and frightened by this alien behaviour, I begged the medical staff to do more to help me. Apologetically it was explained that the antidepressant had not yet had a chance to take effect, that relief could still be weeks away. To help in the meantime I was co-prescribed anti-anxiety medication and shipped off to a psychiatric unit, where my antidepressants were doubled.

Violent suicide attempts soon ensued, and by the fourth month after my initial diagnosis so did electric shock treatment. My partner and my family, at their wits’ end and terrified, were led to believe my condition had progressed to something worse than depression.

Desperate for answers as to why this was happening and without any satisfactory explanations forthcoming they eventually conceded that perhaps there were none. This was what mental illness did. Ambushed the unsuspecting. Ravaged formerly stable lives.

Two years had passed since my initial diagnosis and I was now taking six different psychoactive medications including antidepressants, tranquillisers, antipsychotics, and mood stabilisers. A psychiatric hospital was my second home. My arm now heavily disfigured, marred with the scars of repeated, self-inflicted wounds, I had also developed mania. With so many symptoms – agitation, anxiety, depression, severe mood swings and extreme personality changes – the many doctors who by now had been involved in my case at one time or another, proffered a myriad of varying psychiatric diagnoses. Adjustment disorder said one, a personality disorder said another, bipolar mood disorder said the next.

A BBC documentary saved me. A BBC documentary that questioned the safety of SSRIs and the possibility that in some people, they may actually cause the very symptoms they are prescribed to treat. I sat transfixed to the TV screen as I heard one young man featured in the program explain that shortly after starting his antidepressant he began to self-harm. He’d never done such a thing before. Upon stopping the drug the behaviour disappeared.

Remembering my first episode of self-harm all that time ago, I gasped as the realisation dawned on me: I’d only begun to do that after I’d started on the drugs.

What was to become a life changing decision was made then and there. The medication had to go. This would be no mean feat. With so many different drugs, and diagnoses the calibre of bipolar mood disorder, my current psychiatrist would read my ceasing treatment as a sure-fire sign I was launching into mania. Knowing all too well what would follow – hospitalisation and forced medicating – I had no choice but to wean myself in secret.

Over the following months I gradually and systematically dropped one drug at a time; a painstaking and at times gruelling process. The antidepressant was by far the most difficult of all the medications to cease – for days following each tiny reduction I would suffer vivid nightmares, intense irritability, and almost intolerable nausea and dizziness – and it took nine months in total to do so.

Improvement in my mental state was evident with the cessation of the very first drug. Small but undeniable changes at first; I could read a magazine, sleep through the night, engage with my daughter. Once medication free, I had fully regained my sanity. My psychiatrist was thrilled thinking he’d finally got the treatment right. I of course now knew it was the treatment that had made me a mental patient. I set out to research just how such a disaster could have occurred.

Logic told me that my experience could not be just an isolated case, an aberration. After all, there were evidently enough similar examples in Britain to have prompted a documentary. Surely then there were others in this country enduring a similar hell?

I soon came across examples of clinical research dating back to the early 90s documenting several researchers’ suspicions that SSRIs could actually cause agitation, a worsening of depression, personality changes, and induce suicidal thoughts and actions; the very things to strike me early on in treatment.

In the light of such research, why was it that my doctors had not suspected the medication as a possible cause of my sudden deterioration? Why did they add more and more medications rather than stop them and reassess my condition?

When given that very first antidepressant, I’d been told it would take two to three weeks for it to take effect. So when my condition began to significantly worsen at around a week into treatment, neither I nor, seemingly, anyone else thought to implicate the medication; it hadn’t yet taken effect.

What I was to discover was alarming. Though it does indeed take two to three weeks for SSRIs to have their desired antidepressant effect, they actually begin to take action in the system almost right away, achieving maximum elevation of serotonin within 24 – 48 hours. So just because there would be no antidepressant effect for those two or three weeks, did not mean there would be no effect at all.

It is now recognised that the most likely time for a patient to react adversely to an SSRI is in the first few weeks of treatment, upon cessation of the drug, or after an increase or decrease in dosage.

Further confusing the situation, and enabling the medication to evade suspicion, was our belief in the popular explanation that depression results from a chemical imbalance in the brain. This had been drummed into me since the very beginning. I had now learnt that this “explanation” is in fact nothing other than speculation; born in the 50s, still unproven 50 years hence.

Belief I had such an imbalance gave a plausible explanation for my uncharacteristic behaviour – I had a physical illness due to a situation beyond my control. Searching for answers further to that it seemed, would be as futile as doing so for leukemia or a tumour.

I now understood why it was that I hadn’t suspected the medication, why my family hadn’t suspected the medication, but it still didn’t explain why things hadn’t been more obvious to the doctors involved.

In the past few years, thousands of adverse drug reaction reports have prompted regulators to officially warn that SSRIs are associated with panic attacks, agitation, mania, worsening of depression, and inducement of suicidal behaviour – just as suspected by the researchers of the early 90s. But in the years between this early research and the warnings of today, has been a flood of information talking up the benefits of these drugs; information regarding their potential harms has struggled to surface.

As I began to understand the extent to which the pharmaceutical industry is involved in doctor education, I began also to understand why it might have been that my doctors simply didn’t realise the harm their treatments were causing me.

There are drug industry funded symposia where doctors learn of the latest developments in medicine and obtain credits towards their ongoing education. There are the friendly drug reps dropping by the clinic, updating doctors on the latest drugs, dropping off samples to get patients started on treatment.

Some doctors prefer not to see these reps and rely on subscription journals instead. But sadly this doesn’t mean they avoid industry influence. The practice of ghostwriting has crept into these journals whereby professionals are paid to lend their names to articles the drug companies have produced. According to the deputy editor of one widely circulated medical journal, it’s a practice that’s “well known, scandalous and outrageous”.

I was astounded to learn that the very questionnaire designed to aid doctors in making a diagnosis of depression, and which was in use around the time of my own diagnosis, was backed by a drug company with a new antidepressant on the market.

I was further astounded to learn that this questionnaire classified 49 per cent of participants as mentally ill. I have to ask myself, had it not been for the existence of such a diagnostic tool, would I ever have been labelled “ill” in the first place? Had I not been, it is unlikely I would have been medicated, then all that followed might have been avoided.

How in this tangled mental health care system could there not be others suffering as I had suffered? How many others have been diagnosed with an “illness” they might not really have, given medication they might not really need, and possibly have reacted badly to it as I had done?

Throughout my ordeal I had continued to write a journal and had taken on a formal unit of study to advance my writing skills. I had wanted to write my own story focusing on my decline from ambitious, successful career woman, to chronic psychiatric patient, exemplifying in my experience how mental illness does not discriminate. With my newfound knowledge I realised I had a completely different story to tell, and I have told it in my book, Dying for a Cure.

Dying for a Cure is not anti-psychiatric medication. I have been told by many that antidepressants have been a life-saver for them. I did not write this book to sit in judgment of those seeking relief for depression, anxiety or any other form of psychological distress by means of medication.

I wrote this book to give a personal account of my experience, set against a background of evidence that in some people, SSRIs are not the wonder drugs we have been led to believe they are; that in some people, these drugs can induce the very symptoms they are supposed to relieve.

I wrote this book in the hope I may give those who may be unwittingly suffering as I did, the chance to see their experience in mine.

All claims made in this article are substantiated in Dying for Cure, Random House, 2007.