Saturday, 27 November 2010

Perceptions about the Insane

Whatever happened to those adorable and totally acceptable eccentrics that in all cultures were so venerated? I was reminded by a friend of mine who has recently been diagnosed with OCPD (Obsessive Compulsive Personality Disorder) of how those of us who are diagnosed can often not see we have a problem at all and that it's other people's lack of acceptance of our eccentricities that are at fault. It reminded me of my own training at MIND that there is a new theory developing that absolutely no one is free of some disturbance of some kind or another.

Finally this week I was reminded of an excellent Horizon programme 'How Mad Are You?' on the BBC in 2008, which itself was based on an American experiment by David L. Rosenhan. The experiment was to see how accurate and how definable mental illness is by getting volunteers with no known mental illness, and no symptoms to pretend to be ill to see how good psychiatry and in particular diagnosis really is.

'On being sane in insane places' is listed on the web and you can find many links but I recommend or wikipedia for the most considered if not the most objective accounts. Both the BBC programme and this experiment illustrates just how difficult it is for mental illness to be accurately diagnosed and how diagnosis relies upon a combination of factors.

I would personally argue that people who want to pretend to be ill in order to gain entry to a psychiatric unit unless done as a controlled and supervised experiment do have something wrong with them. It's a disturbing place to want to go to because it is full of distressed people as that's what it's there for.

Out of all this though come many lifelines for the mentally ill, not least that people are monitoring and constantly assessing mental health care services. It triggered a thought too that if we can learn to pretend to be well and are able to sustain that persona, are we not then well? I would say not necessarily but it might be a step toward improving on our health to at least start imagining that person and that can then become a target to aim for. The first step is always the desire to function better by not letting the illness control who you are or what you want to achieve.

In the same way that paraplegics, blind and deaf people learn how to function in mainstream society so we need to learn how to manage our own conditions to function at the best we are capable of. I personally loathe the word 'disability' as it immediately conjures up the notion of limitations. I have not met a person yet who does not have limitations.

So just as other 'disabilities' have learnt to combat this pre-conception by proving they have ability, so too do people with mental illness. The list of famous people 'coming out' is increasing all the time, high achievers. And yet still the perception remains that insanity = dangerous people on a killing spree as that is the only regular story to hit the headlines when it comes to mental illness. The fact that murders are committed by sane people far more regularly still hasn't hit home (See Stats Facts on the right hand side of this screen).

Unlike other disabilities we actually require very little in the way of adjustments to be made in the way of equal rights and opportunities, support and inclusivity. Most things could be improved by consideration, respect and compassion. On October 1st 2010 the law changed in the UK so that it is now illegal for employers to ask about your health history from either yourself or former employers or for them to consciously or indirectly discriminate against anyone with mental health problems. They are also not allowed to discriminate against you for who you are related to or associated with, which I think is a very bold step. How enforceable any of this is remains to be seen but I think that overall its intent is a step in the right direction despite its pitfalls.

The belittling of intelligence of the mentally ill is sadly still shocking, alarming and rife. Just as deaf people get treated as if they are stupid, so too do the mentally ill get treated as if they are unable to think straight at all. It is simply not true. It is usually one area of thought processes that gets problematic not the whole lot and these can have very real and easy to understand reasons, e.g. a victim of crime may fear certain situations and types of people or other events that trigger phobias.

Both the Rosenhan experiment and the Horizon programme illustrate psychiatry's pitfalls. It is not perfect, far from it. It is after all, a comparatively speaking new science; a new medical discipline. In common with all medical care it has and does make mistakes while it learns. In the 19th century limbs were cut off to save lives as a treatment against a deep gash because medics didn't understand about infections then, now limbs are totally reconstructed where at all possible. The progress mental health care has made since the 1950s when lobotomies were common is substantial. That progress hasn't stopped and it is only through our help that progress can be more rapid yet.

I advocate going for help as early as possible so we can avoid being sectioned when things get much more complicated. When sectioned it is far harder to complain and be taken seriously and impossible to just walk out. If you go to the medics early, you are still free to discuss with others how good or bad the treatment is and if you've got a good team they should willingly accept and facilitate a change of psychiatrist, therapist/counsellor or medication.

Don't imagine I don't know how phenomenally brave we have to be to take that enormous leap of faith to enter into accepting help from anywhere let alone complete strangers which is what mental health professionals will be to you the first time. I remember the day I woke up when sectioned to do so. I was petrified, not least because I was under the delusion that they were only using me as a guinea pig in some elaborate experiment - a fear triggered by and based on mental health history. However I had become so desperate that I had nothing to lose by turning to them and everything to gain. I gained... I got better.

Correct your medical team on anything and everything they get wrong about what you think and feel. They may deal in psychiatry, but they are not psychic. If you don't tell them, how would they know what on earth's wrong? If you don't tell them, all they're left with is assumptions based on another patient they've come across, but that patient isn't you. You are unique and even if you do fall into a 'category' and get a label for your illness it is still a very individual experience. No two people will be exactly the same in their responses to drugs, therapies or anything else.

Admit when your medical team have it right so they know when they are on the right track. If you don't know, tell them. On many occasions with counselling, I had to say, "I don't know, let me sleep on it." And that's exactly what they did and they further helped me if I got stuck.

Tell them what you need. You may be anxious or depressed about many things; have many things going wrong. Again only you can tell them what they are. This includes the effects of medication, such as "yes I'm less anxious now, but I've lost all interest in even things I enjoyed." That should prompt a discussion on what you want to be like and what your recollection of being well is.

After I was released from being sectioned I went back and banged on the door because all the practical problems were exactly the same as before. Nothing had changed, the situation was as bad as ever. I was admitted as a voluntary patient and I point blank refused to leave until I was allocated a community team to help me sort all the practical problems, from a Social worker to help with finances (benefits and creditors), to having a Community Psychiatric Nurse to help me with all the events and drug management on a daily basis while undergoing counselling for the long term issues at the root of my depression.

In the UK I know we are so much luckier than in other countries around the world. Some countries have next to no National Health Service, let alone anything to help the mentally ill. In others you can only access health care if you pay insurance or have enough money to pay to see psychiatrists. Such cultures are a goldmine for rogues and fraudsters. Never be guided by their claims, quotes or satisfaction ratings or comments. The world wide web is there though to help steer you in a safe direction for the help you need so seek advice on how to choose your medical team from recognized and long established organisations and institutions (e.g. MIND and the Institute of Psychiatry here in the UK). Also look for suggestions from organisations like MIND for the best publications to suit your needs.

I do not recommend on-line diagnostic services of any kind. Responsible organisations will always advise you to make an appointment with a professional for an assessment. I am dubious and suspicious of on-line counselling too. Nearly all of them expect you to pay at least a non-refundable deposit and many will end a session with a cliff hanger to make you go back for more - far from helping you, you are more likely to find that they will be doing their best to keep you ill until they have got your last penny out of you. However, I can see how on-line counselling could be used as a precursor to face-to-face appointments later on if you are too frightened to see someone to begin with but I have not yet come across anywhere that offers this under those terms yet.

Far better in an emergency is a call to the Samaritans, Social Services or the police in the UK who will be able to advise and help you. Sadly, some nations are such oppressive regimes that even the police cannot be relied upon. I despair that in the 21st Century such regimes still exist. Try the Red Cross or even appeal to the United Nations and human rights organisations if you can. There's also this one, that someone on Stephen Fry's forum site pointed out (many thanks). I would be interested to know of other sources of help there are globally to add to my website list so everyone can benefit.

I hope no one ever encounters a situation whereby you need to make a complaint, far easier in my opinion, if at all possible to change the medics you see. Sadly your case is all the harder to fight when you are ill than for people who battle over maltreatment and misconduct over physical conditions. The onus will be on you to provide evidence. You will need to do so in a very collected way in order to stand a chance of getting anywhere. You may be up to it once you get better, but you need the right team to get better in the first place.

There are some sources of help in the UK, including advocacy services, the CAB and your MP, but everything very much depends on evidence and the records you keep of the events as they happen.

In the UK you can contest being sectioned and you will be allocated a solicitor (lawyer) if you don't have one, but very few of them specialize in mental health and with the weight of medical opinion against you, your chances of success are slim at best. I tried and failed, but they were right to keep me in hospital back then, I needed to be there.

Yes, we in the UK are not doing that badly and it's thanks to the Anti-psychiatry movement that impersonal institutions have been closed and that we as patients are beginning to be respected as experts in our conditions albeit from a subjective point of view. We have a voice now, let's not lose it. I vehemently believe we must keep the dialogue going now others have fought so hard on our behalf to start it.

The Future of Mental Health Care
We can and will be (with or without our consent) instrumental in future progress. Better it comes out of collaboration as I would hate to see a return of some of the horrors of the past for us to be negated and reduced to silence once more.

Another Horizon programme covered hermaphrodite babies (children with no clear gender). Within the first few weeks of their lives their gender is decided upon and a gender is allocated through surgery. Some of the children grew up quite happy with no problems, while others developed problems because they felt they were the wrong gender. During studies of these people scans were taken of their brains, and the conclusion was that there is strong evidence now to suggest that a part of our brains determines our overall sexual orientation.

I'd like to think in the next 50 years science will have developed scanners to be able to detect a root physiological cause for all mental illnesses, and from that learn how to fix it. However, no such fix will ever eradicate mental illness, for while there are physiological factors involved (e.g. chemical imbalances) it will only ever be one factor in a very complex set of illnesses. Genetics play a part but whether I became ill due to genetics or due to environment is nigh on impossible to categorically determine for the two cannot be separated.

Thankfully people being sectioned for having an affair, or not behaving as other family members want them to are largely a thing of the past. Such were the dark times. It is no longer possible for people to be sectioned on the here say of family, employers, friends or the general public. No one can be sectioned without there being agreement from medical professional; usually a GP, a Social Worker and a psychiatrist.

Aside from genetic elements people become ill from sheer unforeseen events e.g. murder, torture, rape, abuse, robbery, poverty, fire, floods, the death of a child or indeed any relative by whatever means etc. And there's the truly massive global shocks such as volcanic disasters, hurricanes, droughts, tsunamis, 9/11, War, Nagasaki, Hiroshima, the holocaust.

No. Mental illness will never be eradicated, but from here on in I sincerely hope a greater awareness and compassion develops, out of which swifter and better recoveries evolve. I also believe that drugs and all therapies will continue to be refined and improved within my own lifetime. It requires all of us to give continual feedback on what works and what would be better for options to increase. Yes treatments are not where they could be, but at least we're on the road to increasingly better possibilities. The answer is in our hands to ensure that it happens and in how quickly it can happen. We overcome all difficulties and disputes quickest and best through dialogue.

Finally I hope we will see a return of our love and acceptance of people just being a bit different, quirky or eccentric but with an increase in the level of respect shown to them.


  1. you write fluently and passionately, and I really enjoyed reading this.

  2. Many thanks Aries Moon and welcome.


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