We need to have the right target

In the battle against bipolar disorder diagnosis we need to have a target… something to aim for. I started out by learning about self management of moods. The target was to stay well, however, I found it limiting as the target is a bit vague and did not seem to tackle the root causes of mood instability. When I learned about mental health recovery through studying WRAP I set up www.bipolarrecovery.org. I seemed to have taken a step in the right direction in looking towards recovery and not just managing the disorder.

However, I was still accepting that bipolar disorder was a real thing, like a real illness that had definable causes and in some way separable from other illnesses and disorders. After more than 10 years of study I can say that bipolar disorder is no more than a way for health professionals to quickly tell each other that you have various symptoms. It is controversial and for some shocking to hear this, but please stay with me.

There are a great many symptoms that go with a bipolar disorder diagnosis. The symptoms range widely including; not sleeping enough, spending more than you can afford, talking too fast, appearing to be over-ambitious… yet none of these are unique. People can experience these four symptoms and many of the other listed symptoms of bipolar disorder and not get the diagnosis. While others who only have a few of the symptoms can be given a bipolar II disorder diagnosis. This is a variety that has less extreme highs.

Avoiding any bipolar diagnosis, recovery after a diagnosis and eliminating the diagnosis all start with having some knowledge of bipolar disorder and this means having some knowledge of the symptoms the health professionals are noticing. If we are not careful this can be become a huge task as the symptoms are so various and most seem no more than extremes of what everyone does. Too much focus on symptoms can also be self-defeating.

It is like me saying, “Do not think of a blue tree.” If you did not think of a blue tree just then or have still managed not to think or imagine a blue tree in any way at all, then I would like to hear how you managed this. :0)

Thinking about symptoms can be like this. To avoid, overcome or eliminate a disorder we have to be a bit cleverer than just looking at what we are trying to avoid.

Giving people choices

Giving people choices is mainly what this whole web site is about.

If you do not yet have a bipolar diagnosis then you have a choice of trying to get the diagnosis or avoiding it. It may sound strange that people want to be diagnosed. The thing is that when we get desperate it can seem that almost any diagnosis is better than having one professional after another look at you and say, “We have no idea what is wrong with you.” Or “We cannot understand why that medication didn’t work for you. Let’s try this new one.”

There are only so many times you can hear this before you want someone to say they know what is wrong and that they have a plan for you.  A Community Psychiatric Nurse told me, “If you are going to get a mental health diagnosis then the best one to have is bipolar disorder.” I suspect this was not an official view, but certainly it is a common view when looking at a choice between; bipolar, schizophrenia or borderline personality disorder. Bipolar disorder has a lot of stigma attached but nothing like those other illnesses. I interviewed a man who had been physically attacked when his neighbours discovered that he had a schizophrenia diagnosis. Fortunately this does not seem to happen with bipolar (well I have not heard of it in the UK)

In the media we see many examples of rich and famous people who:

  • have been diagnosed with bipolar
  • are said to have bipolar disorder even though they have no such diagnosis
  • and some who may say they are a bipolar type of person with little evidence of any disorder

A lot of these people seem to be doing OK. Even those who struggled for a while often seem to be doing okay again. All this celebrity bipolar can make it seem like an OK thing to have. I am hearing, “Bipolar, that is the latest celebrity ‘must have’.”

The biggest impact of seeing bipolar celebrities is likely to be on young people who are yet to see close up how awful it can be for those who have been diagnosed. Very few people are lucky enough to be diagnosed and then be able to claim to have ‘Bipolar Lite’ – the variety that gives you the creative, energetic, humorous edge with not so many of the dark days and destructive flings. Stephen Fry must be one of the most famous bipolar people. He is open and honest about having problems however, what most of us see is the cheerful confident and competent Stephen. It is not his fault but it all adds to the illusion (or delusion) that bipolar is not so bad and a diagnosis could be a way to a better life for those who have struggled with depression and changeable moods.

If you have avoided the diagnosis so far, you have a choice, you can start finding out how people control their moods. Start talking to people who have been through the bipolar thing and come out the other side. How did they eliminate their disorder? If they have also eliminated their diagnosis, how did they do this? What they did will give you clues for avoiding the diagnosis in the first place.

LABELED BIPOLAR

Bipolar diagnosis eliminated ? – We are working on it

Our work:

  • How to get correct diagnosis and help for those with mood difficulties
  • How people can be better helped with mood management
  • How those who are now able to manage their moods well can get rid of a psychiatric label
  • How can people avoid becoming unwell, return to good health and avoid being labeled as bipolar?
  • The eventual elimination of bipolar labeling

Blog 1:

LABELED BIPOLAR

eliminating-bipolar-diagnosis1.jpg

Bipolar ladder? Seems like we are told to stay on it, just going up or down forever. It is a crazy diagnosis!

I was told by doctors that I would need psychiatric drugs for life and not to think about getting better. It turned out the drugs did not treat any of the root causes. Instead I needed to focus on recovery. This allowed the signs of stress such as not sleeping well and talking too fast to happen less often. Wellness Recovery Action Planning was just one way in which I helped myself with this long recovery.

Fifteen years on, I now know a drug prescribed for a stomach complaint increased my insomnia and restlessness. A few nights and days without sleep were all it took to be forced to take psychiatric drugs (held down and injected in the bum!)

Unfortunately, there is no procedure in the UK for removing a bipolar label from medical records. Once labeled as bipolar it is supposed to go with you for life. Even if the next day a different psychiatrist were to say it was an error. My medical records show “BIPOLAR DISORDER” even though all that happened 13 years ago.

  • When will ‘ undiagnosis ‘ be possible?

Bipolar disorder is close to a perfect diagnosis for selling drugs. Anyone can be diagnosed with bipolar disorder. In most countries the diagnosis goes with the message, “Keep taking the psychiatric drugs no matter what happens”. Even if you fully recover from whatever was going wrong or find there was nothing wrong at all, you will still be told you must not stop taking the drugs because withdrawal will cause ‘bipolar symptoms’. It is a strange disorder with most doctors discouraging recovery.

  1. I work with people wanting to eliminating their own bipolar diagnosis.
  2. I am also working on the wider issue of whether anyone ever needs a bipolar diagnosis in the first place.

Bipolar disorder evolved from the diagnosis of manic depression – It is no longer the same thing

Prior to 1980 only a very few people were ever diagnosed as manic-depressive but that was a different disorder. Manic depression was a disorder of mostly short episodes of disorder with mostly long periods of wellness. Many/most people only had one ‘high’ and one ‘low’ episode in their lifetime. It rarely disabled anyone. The bipolar disorder label was created in 1980 by psychiatrists in the USA looking to explain something new that was happening to people taking psychiatric drugs. Up until 1980 bipolar disorder and its description simply did not exist in the psychiatrists’ manuals.

Bipolar may not sound as bad as manic-depression but when it comes with no hope of recovery it becomes far more damaging.

Our world has changed a lot since 1980. For one thing children are eating far more food containing additives  known to cause mood instability. The average age for bipolar labeling in the UK dropped from 40 to 19 during the 1990’s.

Gradually the drugs used to control mood cause physical illnesses. These drugs have been associated with early death. In many ‘developed’ countries it has reach epidemic proportions with bipolar now one of the top disabling of all health problems. Psychiatrists who say they do not experience bipolar symptoms themselves have told us that it is “…degenerative and that is why recovery is not possible.” A frightening idea that could easily take away a person’s last bit of hope.

In our work as mental health researchers and trainers the many bipolar diagnosed people we meet tend to either believe:

1) It is something they were born with/developed at an early age that they will always need drugs for it. They talk as if psychiatric drugs are more important than anything they can do for themselves.

or

2) It is mainly due to past traumas, current stresses and untreated physical health troubles, saying it is something they can learn to overcome with minimal use of psychiatric drugs.

We have met, interviewed, trained and spent time with enough people in each group for enough years to be convinced that the way we view bipolar disorder determines its outcome.

1) Those who believe it is incurable and place huge emphasis on psychiatric drugs gradually become more unwell, achieve less and less and have an increasingly miserable life with fewer and fewer good relationships.

2) Those who believe they can overcome the disorder using, Mood Mapping, Bipolar In Order or similar ways of staying well achieve more and have an increasingly better life with more good relationships.

With bipolar diagnosis what we believe becomes our reality.

Recovery is possible for those who have hope, take responsibility and have an open mind.

This site is about giving people choices about how to think about bipolar

I was told that it was largely hereditary… “Your parents were nuts and that is why you are nuts.” It turns out there is very little truth in this. Yes, some illnesses run in families, however, research has confirmed that anyone can experience massive shifts in mood and so anyone can be labeled as bipolar. A lot of things we were told about bipolar disorder have turned out not to be true.

The idea that, “Bipolar disorder can never be cured. Once you have a bipolar diagnosis you have it for life.” takes away a lot of hope,  shifts power away from ordinary people and makes psychiatrists more powerful. To consider and talk about the alternative (the truth) you have to be brave. We were told we were mad when we said we no longer needed to be described as bipolar. That was a long time ago. It does make us mad (angry) that kids are being labeled bipolar rather being told the truth about moods.

Eliminating disorder: To survive bipolar disorder we must eliminate the disorder part. When friends (and ideally family too) can help us eliminate the causes of disorder we find coping, recovering and thriving become easier, regardless of who says we are still ‘bipolar’ and whatever may be meant by that.

Eliminating your diagnosis: Some doctors are starting to agree that bipolar labeling does not have to be for life. In the UK doctors are not allowed to remove incorrect or obsolete bipolar labeling from our records. While we want this to become possible, a step in the right direction would be for incorrect or obsolete diagnosis to be marked as such and  made less visible. This would allow medical professionals to consider our physical health before reading that we have an incurable disorder.

Time to stop the labeling: When we or our families are desperate it can feel good to get a diagnosis/label. It implies that progress is being made and useful treatment will follow. This is false hope. If you have a choice, reject the bipolar diagnosis. Accept that you have difficulties. Difficulties can be overcome. The bipolar label stays. People who accept the bipolar label generally get sicker and die younger than those who do not. Find people who used to be considered bipolar and mentally ill and are not ill now. Learn how they coped and recovered then do what you need to do to stay well. We believe it is better to be considered well rather labelled for life. (where I write ‘we’ I am including associates from Rethinking Health (UK) who I have teamed up with to provide training throughout England and Wales).

Next article = Giving people choices