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

About Roger A Smith
Helping you to think about bipolar disorder in different ways so that we can eliminate the disorder and eventually eliminate the need for this diagnosis.

18 Responses to LABELED BIPOLAR

  1. Jen says:

    I believe that the word ‘disorder’ contributes to the ‘stigma’ around bipolar. I have found bipolar to be more than just mood swings, it has been a significant journey for me and the outcome has left me more in touch with spirituality. I agree that saying that it is something for life can be very disempowering, I believe this isn’t the case and we can definately see it in another light

  2. Jeff says:

    20/20 or 60 Minutes should do a show with people that were given these diagnoses and lead to believe they were mentally ill and would be for life… then recovered once they stopped taking the prescribed medications. I was such a case. I was given an antidepressant for something other than depression… (to relieve stress that was possibly causing an infection in my body) After experiencing a full blown manic episode, I was diagnosed bipolar and given a lot of medication for more than 2 years. My symptoms got worse, my moods unpredictable. I became a test dummy for the different “cocktails” my psych decided to try.

    I was lucky. I never truly accepted the bipolar label. I read a lot on the internet, finally read a few mind freeing books… Anatomy of an Epidemic is a must… and I broke free. It took many months, and my true recovery may not happen for a year or two… but I am free from the system. I no longer listen to the “professionals” and I question everything. My daughter is now in some treatment and I’m making sure they do not give her any medication… I’m also starting to take a bigger role in her recovery. She is a troubled teen, but they tried to give her 5 labels already. My ex bought it… but I am starting to convert her… it’s like convincing people the world is round… not flat. People want to believe the professionals.

    • Margaret Taylor says:

      Yes, people believe the “experts.”

  3. Someone Else says:

    The reason, other than power over the patient and potential profit, a medical practitioner will not correct a bipolar misdiagnosis (and please read the DSM-IV-TR for proof drug induced mania is actually a MISDIAGNOSIS, if mania is caused by a drug, a bipolar diagnosis is WRONG!) is due to fear of a malpractice suit for misdiagnosing drug induced mania as bipolar. Claiming a drug induced mania is bipolar is MALPRACTICE, according to the DSM-IV-TR itself! But millions of people have now been misdiagnosed as bipolar, so if they start correcting it now, there could end up being millions of bipolar malpractice suits. I pray those still within the statute of limitations for malpractice may find lawyers. The crimes against humanity due to bipolar misdiagnoses, and the resulting requisite drugs, that DO NOT CURE DRUG INDUCED MANIA, is truly criminal now. This is easy to prove, we just need the lawyers to start helping those misdiagnosed.

    • Hi ‘Someone Else’

      You are making some interesting points there and certainly I have not thought much about the legal side of this. Mania, psychotic episodes, or simply weird and frightening experiences generated by psychiatric drugs seem to be far more common than first appears.

      The more people I have talked to, through the research I have been involved with and through support groups, the more I find problems with psychiatric drugs lead to bipolar diagnosis rather than bipolar being seen before the use of psychiatric drugs.

      I consider Stephen Fry to be an example of drug induced bipolar as was prescribed a psychiatric drug from age 14 long before anyone had ever heard of bipolar in the UK and at a time when no one was suggesting he was suffering from manic depression.

      It could be time a few more psychiatrists are taken to court. Perhaps a starting point could be all the psychiatrists who regularly use drugs like prozac as a ‘diagnostic tool’. You have probably heard of this practice of giving children who are moody a dose of prozac to see how they react. If the child becomes more moody or more energetic then they are likely to be diagnosed as bipolar based on this ‘test’!

  4. GregM says:

    How I Cured My Bipolar Disorder
    I read that omega-3 was being used for psychiatric disorders and gave it a try for myself. It didn’t work, but I noticed that after 13 years my urine had no calcium sediments in it anymore. Before omega-3 supplements any extra calcium I ate showed up as extra urine sediment. I then read that calcium was important for proper neuron function and added calcium supplements to my diet thinking that I might not be getting enough. I increased the amount until I started seeing calcium sediments in my urine again. My mental symptoms stopped then. I believe the mechanism for the success of omega-3 is through its ability to allow the body to maintain a higher blood level of calcium. Higher calcium levels are known to reduce the level of excitability of neurons. Perhaps omega-3 allows the kidneys to reabsorb calcium to a level that satisfies all the body’s requirements.

    • Hi Greg,

      I find discussions like this very interesting. It is only recently that my own calcium in blood has been tested and found to be at the very bottom of the normal range. This may be partly as I have stopped eating bread (that in the UK supplemented with calcium) and stopped having dairy. However, I think there has been something wrong with my calcium for a long time and this could be one of many factors influencing mood.

      (One of the many ideas put forward for how lithium regulates mood is that it influences the way calcium is used in the body.)

      As for omega-3; anyone who is deficient in omega-3 will be helped by supplementing it, but when a diet already has enough then it is unlikely any improvement in health and moods will be detected. The only way to know is probably to do what you have done and take the omega-3 for a while and judge for yourself if it is useful.

      You may have guessed that I am not blogging at this time. I am putting my energy into research and writing projects that are going to keep me busy for a while. Do please continue to check in on rethinkingbipolar as there will be a lot of good new articles here in 2014.

      Roger

      • GregM says:

        I did read that one of the side effects of lithium is high blood calcium and low urine calcium. Another interesting fact I read was that omega-3 is being used to treat kidney stones (in addition to being used to treat mental illness). That’s what gave me the confidence that my hypothesis is worth making public. I’m currently taking 4 x 1200mg fish oil supplements and 4 x 333mg calcium supplements (they also contain magnesium, zinc, and vit-D) each day. To get a rough measure of urine calcium, I collect my urine in a plastic pitcher for 24 hour and I see how much insoluble crystals stick to the plastic.

      • GregM says:

        I have an update for you – I discovered that I have oxalate intolerance. This causes calcium to be bound to oxalate and therefor less available for the brain to lower neuron excitability. If you recall, I said that I was having success with omega-3 and calcium supplementation. The calcium supplementation helps because some of it binds with the oxalate and the rest of the free calcium is then available for the neurons. I’m not exactly sure how omega-3 is helping. It is being used successfully to treat kidney stones, so it must be playing a direct role. When I was admitted to the emergency room after suffering from a seizure, my blood calcium level was near the bottom of the normal range. However, the normal range may not be entirely healthy. It may be skewed by some calcium binding to oxalate in the general population. In other words most people have less than an optimal calcium level but not enough to cause psychiatric symptoms. Oxalates are in almost every food, but some have extremely high levels. Those are the ones (like almonds and beet greens) that were overwhelming my calcium intake level, and gave me the confidence that this is really my problem.

    • Last week someone in UK told me about omega-3 to treat kidney stones… interesting.

      It sounds like you are on the right track there. A huge number of people are short of Vit D, Zinc and Magnesium and shortages of any of these will directly or indirectly affect mood.

      I would be interested to her your thoughts on taking extra vitamin C. Although not so often mentioned with respect to moods, I… well, I won’t say any more on this, just like to hear your thoughts or experiences of extra vitamin C, health and emotional health.

      • GregM says:

        I was taking 2 x 500mg vit-C before taking the extra calcium and it didn’t help me then. I’m still taking it now, so It could be working in conjunction with the calcium. I’m continuing to take Vit-C because it has a lot of important functions. My hypothesis is based on neurons of high excitability firing with no stimulus. It is well know that seizures can result from a calcium deficiency. A seizure is many neurons firing without stimulus. I’m saying that each different type of mental illness has a localized group of neurons firing without stimulus for the same underlying cause as seizures. It is only a matter of degree.

      • GregM says:

        Check out this web page on calcium deficiency:
        http://www.healthy.co.nz/ailment/1018-calcium-deficiency.html
        They do say that vit-D as well as A &C are necessary for calcium absorption.
        For symptoms they include “cognitive impairment, convulsions, delusions, depression”.
        I’m sure bipolar disorder could also be listed there.

      • GregM says:

        My total blood calcium was also at the bottom of the normal range and no correction was made for bound calcium. Only the ionized calcium is physiologically active. Here is a website ( http://www.globalrph.com/calcium_calc.htm ) that says patients “may show signs of hypocalcemia despite a normal total calcium level”. I really don’t think the majority of psychiatrists know medicine. I would have been better off going to an endocrinologist.

      • GregM says:

        Check out this website: http://www.health.harvard.edu/blog/shared-genes-link-depression-schizophrenia-and-three-other-mental-illnesses-201303015944
        It says they found 5 common genes to a number of different mental disorders and
        “Two of the affected genes help control the movement of calcium in and out of brain cells.” I think this may be what my calcium supplementation is counteracting. There is one more thing I discovered. I also have to avoid very high oxalate foods. The oxalate binds to calcium and makes it unabsorbable. Lesser oxalate foods are ok because I’m taking more calcium than is binding to oxalate.

      • GregM says:

        I found some additional information on high vitamin C intake that may link it to mental symptoms. In this article: http://www.nature.com/ki/journal/v63/n3/full/4493529a.html and many others
        they say that vitamin C can be metabolized to oxalate and they link it to kidney stone formation. If you recall, I said that high oxalate foods caused some of my mental symptoms because it bound to calcium and a low calcium blood level caused neurons to fire without stimulus. If you are taking a high dose of vitamin C you may want to give a low dose a try for a while to see if it helps.

  5. Simone says:

    Hi Roger. I am currently going through mental health & found your book in the hospital i’m currently in. You have made my passion stronger to share my story but also help others going through mental health. I really do believe the unknown places alot in mental health. When i say the unknown i mean spiritual things. I do not like that term but i have used it to make my point more affective. Anyways this is a thanks to let you know i appreciate everything your doing. God bless you.

    – Simone Antonia

    • Thank you for your kind comment.

      When you say that you found my book on the ward I am guessing it was my first book, Stop Paddling/Start Sailing. I sold about 600 of these so I guess they show up all over the place.

      A lot has happened for me in the ten years since Stop Paddling/Start Sailing was published. Life turned out to be a lot tougher again… at the time I felt I could rely on the lithium etc… turned out lithium is not a good long term option and I needed to learn a whole lot more about how people cope without psychiatric drugs.

      I am just getting back into working full time after a couple of years of needing to take things easy.

      Please look in on my blog from time to time as I hope to be writing lots of useful stuff here soon, having spent a lot of time researching.

  6. Pingback: Stressors #notjustbipolar – Article from 2011 updated in 2014 | Rethinking Bipolar

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