PLEASE NOTE: This blog has now moved.
As of 7/11/15 all new posts will appear on https://blogs.canterbury.ac.uk/discursive/
and comments on this site are closed.

Thursday 16 May 2013

Guest Blog: Bipolar or Not?


Psychiatric labels can be both helpful and confusing. In the light of the current DSM debate, guest blogger Fay Thomas writes about her struggle to hold onto a normal response to personal grief having been diagnosed with bipolar disorder some years ago.


Being labelled bipolar
casts a long shadow
Photo: SigmaOne
'Are you suicidal?' asked the doctor, peering at me kindly as she offered tissues for my tears. I wanted to answer truthfully, but it felt difficult. I hoped the answer was no, because I would not have done anything to harm myself, but my mind was full of dark thoughts. So I answered no, which seemed dishonest, especially since I had failed to tell her my history.

As a much younger, highly-distressed woman, I was given a label of 'bipolar mood disorder type 1' to describe my see-sawing moods. They cycled between delusional elation and the depths of despair. Aged 28, I had made a serious attempt to kill myself which led to a traumatic series of hospitalisations. My memories of those years are grim, painful and still difficult to articulate. I believe some of the treatment decisions made on my behalf were not in my best interests. Incarcerated and robbed of my own voice and power, it would be hard to trust medics again, especially with my mental health.

Prior to my GP visit, it had been 23 years since I'd experienced serious mood deterioration. For thirteen of those, I had been medication-free - unusual for someone with the bipolar label. Recovery had been a long, hard slog which presented serious risks. It had meant doing my own reading and acting on my own hunches despite the warnings of doctors.


Only a few close friends and colleagues knew of my past. They said my history seemed surprising as it didn't fit with the person they knew. Some health professionals thought I may have been misdiagnosed, so hard was it for them to believe in recovery from serious mental illness.

But it had proved illusory to rest on my laurels. Recent life events had been titanically stressful and I was in trouble. In my years of respite from serious mood swings, I had been careful to moderate my life - to eat well, sleep well, nurture myself with good relationships and steer clear of destructive, unmanageable stress. But we can't always package up our lives as neatly as we would like. I had known that I was over-reaching myself, as I struggled to manage my difficult circumstances.

So it was a crushing blow to be in a GP's office admitting to being so depressed that I was struggling to function and experiencing near-total insomnia. I was scared to tell the GP my history. Might it spark events that would end in sectioning with its associated horrors?

The GP looked genuinely confused (and cross) when I refused anti-depressants. I knew it would be unwise for someone with my history to take them without a mood stabiliser. And SSRI's do not always perform well in research: demonstrating no benefit beyond placebo for moderate (ormild) depression.

However, I had a secret. I believed my sadness was a sign of health, rather than illness. It was a human reaction to life-altering events. I could temporarily blot it out, but the work of mourning could not be avoided. So the only prescription I accepted was for something to help me sleep.  Based on the information that I'd given the GP, she reluctantly agreed to no further meds, provided I attended psychotherapy. I added to the prescription: mindfulness, good food, sunlight when I could get it, exercise and the love of good friends. My doctor had no problem with those.

I contacted a therapist, with whom I hoped to explore the impact of recent events. Like my doctor, she made it clear that she was concerned and considered me at risk. She encouraged me to tell my doctor about my past so she didn't have to.

This left me terrified and vulnerable. What I wanted was to understand why I felt as I did, without the dictates of the DSM, NICE guidelines or the pressures of my past. I wanted to be seen as understandably distressed, rather than a 'bipolar' and in need of a harsh regimen. I was willing to take whatever medications were needed, but only if really needed. But how would I know? I wanted to ask who the professionals were keeping safe - me, or themselves?

It is a serious question. Science is helpful in telling us about signs and symptoms, but healing is an art. There are those of us for whom the evidence base may not always be the primary thing.

I endured months of severe insomnia, and the gusts of profound sadness and anxiety that came with it were hard to bear. Nonetheless, staying attuned to my emotions has allowed me to process my grief. This may have been more difficult had I relied on anti-depressants, which could have further destabilised my moods. Clearly, my course wouldn't be right for everyone, and those experiencing severe depression may find such an approach impossible.

I wish I could have trusted the professionals around me, without the fears of sectioning and whatever else my label may have brought to bear. Experience had taught me that they would act to minimise risk. This speaks loudly to the prevailing culture of evidence based practice and how people's real needs can get lost in the formalities of medical care. I wonder if risk may sometimes be heightened as a result?

My experience also says something about the power of psychiatric diagnosis, and how its impact may never leave me. To realise that I will always be thought of as 'bipolar', no matter how many years of recovery might pass, has been tough. Nonetheless, I hope to beat my 23 year record of what the medics will inevitably write off as 'remission'. 

10 comments:

  1. Interesting post. Thank you. I do think though that doctors are in a difficult position. After all you might have walked out the door and done something terrible! Rosie

    ReplyDelete
  2. Thanks for this post. I think it's interesting that so many people speak about attaining recovery but mental health professionals rarely believe that this is possible. I think the problem is that diagnoses rarely add anything to understanding an individual's experience; in fact they detract from this and mean that the main issues a person has with managing emotions/relationships/life (to put it crudely) are not addressed. In addition to this the person has the trauma of being hospitalised and the stigma of a diagnosis to contend with. It's not surprising that the prognosis is bleak. It seems that fighting the labels together with a willingness to experience and process meaningful emotions is what can lead to genuine 'recovery'.

    ReplyDelete
  3. Wow! It must have been really difficult to have been well for 23 years and suddenly find oneself in the position of being regarded as 'bipolar' again. I can fully understand why the writer might wonder whether she still needs the label or not. Perhaps it's not so much the original diagnosis that's the problem, but the fact that the establishment still clings onto diagnoses, even when they've outgrown their utility. Many people DO recover from serious mental illness, but it seems this is hard for the establishment to acknowledge.

    ReplyDelete
  4. Angela Gilchrist16 May 2013 at 16:00

    This is a very complex topic. While everything that has been stated here about the negative potential of diagnosis is true, there can sometimes be a utility to it. Many service-users report that having a label helps make sense of difficult experiences and that the suffering involved is then validated. I think what's needed is a more fluid approach to diagnosis and different criteria for recovery.Formulation and diagnosis should work hand in hand, not in opposition to one another.

    ReplyDelete
    Replies
    1. I am wondering though if it's the diagnosis itself that helps some people or its function. Why diagnosis is helpful to some people? I believe it's basically about normalising their experiences and communicating to them that other human beings have similar experiences- they are not alone in their suffering and basically we are not alone in our suffering

      Delete
    2. "I wanted to ask who the professionals were keeping safe - me, or themselves?"
      "I wonder if risk may sometimes be heightened as a result?"

      These are things I have been questioning myself working as a psychologist and actually as another human practising psychology....

      Thank you for you post and naming this fundamentally problematic issues in "mental health".

      Delete
  5. I, like Fay have also have been incarcerated and robbed of my voice and power. I wish, in my mental distress, I had been listened to, treated with care, sensitivity, respect and understanding. It is frustrating beyond belief for people to keep telling you that they understand "your condition" when they know so little about you, when they haven't even asked "what happened?". It is only through connecting with people's experiences that we can understand better what is going on for people and how best to help them.

    ReplyDelete
  6. I'm also struck by the underlying risk-averse culture that influences much of the decision-making of mental health professionals. GPs and psychiatrists may feel this particularly keenly when holding overall responsibility a large caseload of clients with 'risky' diagnoses.
    It's very unfortunate that the most restrictive practices (hospitalisation, medication, deprivation of liberty) are often judged the most 'safe', despite their potential to cause further distress, and perhaps inhibit recovery.
    Although diagnosis can be a useful heuristic to help identify potential risks, perhaps a climate too quick to apportion blame might serve to overemphasise them.

    ReplyDelete
  7. I think this is a good point. It's such a tough one to get round as well though. Being narrowly fixed in a model of illness and health automatically puts the health professional in a position where they are holding so much responsibility. Perhaps rather more than they should?

    ReplyDelete
  8. I agree with John. As a mental health professional, I sometimes think that we don't trust patients enough. Many retain insight even when they are ill. If someone does have insight and is clearly motivated to get help if needs be, we should trust that a bit instead of just banging them up which is incredibly destructive. I've a patient who was given electroconvulsive therapy without her consent while under section in another country. The experience has severely impacted her ability to trust mental health professionals

    ReplyDelete

Note: only a member of this blog may post a comment.