Muddling Myths and Diagnosis Dilemmas

There are many forms of treatment for the mentally ill now and a few do not involve medication at all; they require changes to lifestyle and how we approach life. However, it is still more common to need medication of some kind to help start this process off at the very least.

If you think in terms of mental health medication as being in two distinct categories it should help everyone be less afraid of them. There are medications used in an emergency situation, just as you might have if you are whizzed into an Accident and Emergency Department following a life threatening accident or ailment; and there are those used to prevent emergencies and help us to recover from dire events and ailments in our lives.

There is a problem though and that is diagnosis. All too often people who are not qualified at all to diagnose try to do so. Even among mental health care professionals the temptation to say that this person is presenting this symptom therefore they are suffering from this condition is huge and nigh on irresistible. To describe the symptoms to a doctor is the right thing to do, but to tell a doctor in any field of medicine that a patient is suffering from a condition you happen to be familiar with could result in that patient's death. You might think that the more experienced a member of staff is the less this would happen but during our research we have found that sadly archaic attitudes have still not left us even among medical staff.

The most common complaint of all from the mentally ill is that their thoughts and feelings have not be correctly relayed to their psychiatrist at all, and there are even examples of test results not reaching them either. This is alarming in the extreme as how can any doctor in any field of medicine be expected to diagnose and prescribe accurately if they do not have the correct information to do so? The effect on their patients is one of anger, frustration and a lack of faith and trust not only that they will be diagnosed correctly, but that they can ever be cured. There is fear that if they show such feelings they will be subjected to even more medication that is unwarranted too.

Luckily there are many diary entry and mood chart devices to help avert this happening and in the UK at least there are organisations like Mind, Rethink, Saneline and PALS for patients to find an advocate if things do go wrong. There is also the Care Quality Commission and (albeit only a handful) solicitors who specialise in representing the mentally ill. Such processes add to stress levels rather than alleviate them and things can be further complicated when the condition the patient suffers from is some form of paranoia or delusion.Additionally cases of misdiagnosis for the mentally ill can be long standing if their conditions are never reviewed. What was modern medicine 50 years ago is not the latest thing now. Shockingly due to time constraints and particularly since the recent 'austerity drive' it is all too easy for a patient seeing a new psychiatrist being assumed to suffer from the same condition as their last episode. With physical ailments we seldom have this happen unless it is for conditions such as cancer, but even then no one assumes the cancer to be in the same place, the same type or to be affecting the patient in necessarily the same way.

Patients are seldom aware of any discussion over whether their brains are misfiring due to predominantly genetic, physiological or environmental conditions, but in all cases patients can learn to manage their own health if supported sufficiently well. It will still mean a life-time in care in some cases, but for most it could well lead to a fully functioning life.

This is where we at Mindwalking firmly believe mental health care professionals need to change. A broken arm sustained as child does not lead to everyone assuming the arm is still broken once deemed healed, but a mental health condition on your files will remain uppermost on your files even if you need no medication at all. This leads to many a human resource professional and manager treating the mentally ill unfairly, denying them work in the first place or treating them as fantasists if they report problems or in any way become emotional.

Different situations cause different illnesses and given that mental health covers such a vast spectrum of maladies it seems rather odd that this attitude has not changed yet. The mentally ill have enough to contend with regarding strangers, colleagues at work, friends and family trying to diagnose them with no training whatsoever without mental health teams themselves being lazy or assuming goodness knows what. There are dreadful cases of deaths being caused because such professionals missed signs of brain tumours, brain injury, autism and many other easily identifiable conditions were it not for the assumption that they already knew what the condition was before they started and therefore the patient never got referred for the appropriate tests or to the appropriate specialist.

It can seem at times like a miracle that patients get diagnosed and prescribed correctly at all but as the decades roll by more and more mentally ill patients thankfully are. The reasons behind this are:

1. Patients are speaking out more for themselves
2. They have advocates to protect them and their rights
3. There is greater awareness of all manner of symptoms and conditions
4. Psychiatrists confer more and more with psychologists
5. Psychiatrists and neurologists are learning more about how the human brain functions
6. Medications are becoming more refined to have just the right effect on precisely the right bit of the brain
7. Medications are beginning to become less addictive and with fewer side effects
8. Many more patients than ever before are able to cope with lower doses because of complementary therapies which leads to greater success in diagnosis for others
9. Psychologists and mental health care staff are becoming more aware of the traumatic effect treatment regimes themselves can have on the mentally ill
10. Awareness of what is happening in these illnesses from those directly involved with mental illness is ever increasing.

Sadly we are still waiting for the rest of the human race to catch up with all of this. It takes years of some of the toughest and most intense training imaginable to become a psychiatrist, psychologist or neurologists so why does everyone else think they could possibly know more or better than they do? The answer lies in that part of our brain that houses our nagging doubts. It's the 'what if' pest again (see previous post last month). Yes, medical teams can and sometimes do miss things which is why it is always important to keep talking to them. If you don't tell a GP that you vomit morning, noon and night and go into see them complaining that your neck hurts, what are they likely to look at, your neck or your digestive system? Mental health conditions are notoriously difficult to diagnose precisely because the same symptoms can be present in very different health problems - hence why a person in a rage might be a victim of crime, a perpetrator of crime, bereaved, have learning difficulties, a brain tumour or a long-term mental health condition.

Please, do yourselves and mental health teams a favour (especially the psychiatrists and psychologists) assume nothing, keep sharing your symptoms and take their advice just as you would for any other form of malady.

It remains an absolute truth that to help both prevent any illness as well as aid any recovery fresh food, exercise, sleep, relaxation and laughter will always pay dividends in the end but the greatest comfort of all for the mentally ill are people who believe them to be able to be well, do things and to share their experiences with not least what they can and do accomplish so regularly and so bravely.

The what if challenge

The role of a psychiatrist is midway between the remit of neurologists and psychologists which are specialist areas in their own right. A neurologist looks as the genetics, physiology and how the brain actually functions in the body; whereas psychologists concentrate more on what that leads to in terms of behaviour. 

Given the human brain has over 86 billion connecting points that we know of so far, it is not surprising that it's taking a while to fathom how a brain should be functioning as the number of possible ways it could misfire, be mis-wired or be malformed it quite staggering. We should count ourselves lucky that it can function at all. Recently scientific research has revealed that the fats in our bodies produce hormones to add to the complexity of organs all contributing toward our well being or ill health. 

Psychiatrists are not the only ones to be playing piggy in the middle while neurologists try to fathom what it is that makes a person mentally well as opposed to ill - general practitioner are there too - so are we. Each and everyone of us, healthy or ill is on the receiving end of the results of all medical discoveries. We play an important part in informing medical teams about what we are experiencing even though we are hindered in that task by not using their terminology to explain things very efficiently. Even among the medical profession the same term gets interpreted in a myriad of different ways while all agree on the overall concept behind each label or phrase. 

It soon becomes apparent that medical care can and often is a very hit and miss, trial and error way affair. As patients, as human beings this is quite alarming to realise until we remember that actually life is and has always been like that and that our best option is always to go with what we know to be safest and which we know to work just as a starting point. It is far better to go with the best we know rather than to rubbish all we know and be left with nothing surely? It is better yet to build on what we know to be true which we largely do.

Here though, as many a mentally ill person can testify, lies a problem. It's the "What if" mindset that is both useful and dangerous to all.

What if previous theories are wrong? What if current forms or treatment are wrong? What if what seems to work now will be proven to cause us problems in the future?

'What if' can lead us into not trusting in anything or anyone including ourselves and our own judgement. What if includes scenarios such as "what if I am imagining the whole of my existence and what if I am an imaginary character myself?" You see the trouble it can lead to? As human beings we often get scared and confused by using 'what if' the wrong way. This results in more and more unhappy thoughts piling up on top of each other to multiply and magnify our confusion and distress - it doesn't help to use 'what if' for things that we cannot change or to speculate on how bad things could get if we don't also use 'what if' to help us.

In many forms of talking therapy this constitutes a large portion of the work undertaken. In effect, it's aim is not to give answers but to enable us to find the means by which we can find a sense of balance between all the possible outcomes there can be. Outcomes are merely the events of our lives which are made up in equal measure from the actions of others and ourselves as well as our own genetics and physiology. No outcome need be a permanent 'answer' or 'conclusion' and it is far better that it never is for something better might emerge from a disastrous situation or something truly marvellous could happen from an already stable  and nice situation.

When we dwell on analysing past events which we cannot alter we can often find ourselves missing out on the present. While it is helpful to find out what went wrong and why, it is less than helpful to dwell on such things if we learn nothing from them. 

Many a mentally ill patient finds it difficult to let go of past events when they have been traumatised by them, but sometimes some patients can be destined to be traumatised by events simply because their brains are made that way or fire off the wrong signals to produce the same effect. It becomes apparent why it is so important for neurologists, psychologists and psychiatrists to be as aware of the differences between the causes of illness as possible. While on a quest for causes though it can happen that these highly knowledgeable medical professionals can end up finding only what they expect to find or are looking for in the first place missing out on other causes which can range from social factors to simple vitamin deficiencies. 

The only way for mental health care to avoid that pitfall is for all those disciplines to always communicate and for each to challenge each other with 'what if' the cause is not just this but also a smidge of this and a dollop of that. That challenge sadly is not often seen as a call for objectivity when it comes to a mentally ill patient voicing a doubt or concern. More commonly it is seen as symptomatic of illness and a resistance to trusting their medical team. 

A good phrase for patients to use when this happens is "Excuse me for wanting you to get to root of my illness so you can get the treatment right." It must always be remembered that the mentally ill while lacking in objectivity do have an abundance of insight as a consequence of their experiences both in and outside of medical treatment. They therefore are the most important source of information to discern what the problem is and where the root causes might be. They have a voice and it is after all them who have to bear the consequences of errors in judgement from all they encounter. Nothing is of greater concern to any patient (be they mentally ill or not) than whether or not they can be well, yet how often is a focus placed on what they view as well? How often is it that any mentally ill person is encouraged to believe that they can be well? If we are brainwashed into believing ourselves incapable of improvement, what is the likely outcome in any situation?

To put it another way, if a person is never going to be responded to as if wellness is a possibility the probability is that individual will always be ill because no one ever acknowledges how much of them is well. Building upon the aspects of ourselves that are functioning healthily is vital to aid recovery from any form of illness or disease. Regrettably when it comes to mental health care, few in the field advocate let alone put this into practice. The reason is because mental health professionals are paid to concentrate on the bit that needs fixing but to the mentally ill it often comes across to them as an archaic institutional attitude that sucks is insulting and worst still, causes them more damage. The fact that most mental health teams mean no harm in some respects only serves to add to the frustrations and distress of those they care for. 

A future for what if

What if there was a greater understanding of what it is like to be on the receiving end of all these decisions about a person's mental health? What if neurologists, psychiatrists, psychologists, GPs and the patients themselves discussed and agreed upon the things that caused their illness. What if every patient was assessed by a neurologists, psychiatrist, psychology and a GP before a joint diagnosis was made... wouldn't that lead to possibilities of quicker and ever less intrusive treatments in the future? 

Here at Mindwalking we are conscious that although making steady progress, treatment and diagnosis when it comes to mental health still lacks much of what is already taken for granted in the rest of general medicine. In the future we hope diagnosing will become a joint effort to pull treatment even further away from the risk of mere opinion for such decisions. It does not help patients of any kind to be confronted with differing opinions as to what ails them - it leads to confusion and distress. Luckily most in the mental health care profession do consult and confer to agree, make sure this happens if you are ever ill.  

'What if' offers a world of possibilities but it is only really useful when it is used to aid understanding rather than generate fear and prejudice and a failure to learn or act responsibly. 

We hope you use it wisely. 





 

The Emperor's Clothes

The story of the Emperor's new clothes is this: An Emperor is conned into buying the most wonderful new suit of clothes by a couple of con merchants and none of the Emperor's entourage has the courage to tell him that actually there is nothing there. The clothes are not invisible, the do not exist. The only person who is brave enough to say so is a small boy, and more or less, that is where to story ends depending on which version you read.

If we translate that into our real world the Emperor could be an organisation, an employer, a powerful or influential person, a boss, a parent or just someone everyone else adores. The small boy would be anyone of disadvantage and/or anyone who just, out of sheer innocence or ignorance of what the Emperor believes, speaks out. When we talk about such Emperor's in the real world though, these clothes are not new at all.

"An error does not become truth by reason 
of multiplied propagation, nor does truth 
become error because nobody sees it. " 
Gandhi

1. Imagine if you will, that you are being bullied at work.

2. Imagine you are being stalked or suffering from physical, psychological, sexual or financial abuse. 

3. Imagine you have a brilliant solutions for a problem.

4. Take another scenario that you fear that someone is at risk of committing suicide and you are a child that no one will listen to.

5. Imagine you are unemployed and your benefits have been stopped for no legitimate reason.

6. Imagine that you have not been paid your wages by a multinational company and you are of low rank in the organisation.

7. Imagine that you cannot not communicate and/or have no communication devices and you have serious problems that you need help with.

8. Imagine that you are starving or homeless.

9. Imagine you are stranded and do not know where help is to be found because there is no information or signposts to it.

Now imagine you are any of the above and have (or have had) a mental illness that you openly tell people about. What do you think your chances are of being heard properly or taken seriously are?

British Law changed in October 2010 by way of the Equality Act. The Equality Act seeks to eradicate ALL prejudice without any indication as to how it is to be done. It may now be illegal in the UK, but it supplies no indication of how it is to be upheld. The only way to find out is to enter into a long winded, expensive and extremely stressful litigation action. (You take the culprit to court) where your opponent still has the advantage because it usually has the money and the contacts to discredit you totally - hardly fair, hardly just.

There are numerous organisations out there that can help in theory, but alarmingly they have all been hit extremely hard by recent cuts from the government, they include: Mind, Rethink, ACAS, Citizens Advice Bureau and even access to legal aid has been cut. Good intent can be far more damaging than the most malicious of intentions if it is not properly implemented and thought through.

The process is made all the more difficult when it is a powerful organisation or government department, e.g. a bereaved person on benefits that I know of was subjected to stoppage after stoppage after stoppage for two years with no reason. When they finally got an appointment to sort it out at a job centre, the member of staff said "Yes, gosh, it is in a mess isn't it? But I haven't got time to sort it today and I'm on holiday for month tomorrow." It took two years to get it sorted via the Parliamentary Ombudsman (you need to go via your MP for that) and the outcome was: that the DWP was at fault but that as the person was bereaved it didn't merit any compensation, not even so far as their credit rating being restored. 

As indicated in my article of last month, even the health care sector itself has insufficient safeguards and knowledge of how to prevent mental illness among its own staff and if that is the case then what hope is there for anyone else understanding the need of the mentally ill to be heard and more to the point, understood and helped?

There is something very important to consider here...

10. Imagine that you are so mentally ill that you are imagining any of the above.

Therein lies the nub of the problem when it comes to providing support for anyone with signs of mental illness and sadly there are people who will lie to get what they want even at the expense of honest folk e.g. women who pretend they have been raped who in my opinion, need psychiatric intervention in addition to a prison sentence. Fortunately such cases are rare but because they exist at all it causes damage in the form of genuinely distressed and desperate people not being heard and not being helped, whether they are in need of a living allowance, need of an advocate such as a lawyer or need of a doctor's appointment.

However, I would rather risk the occasional fraudster receiving support than risk a genuine person in need ever going without it as it literally costs lives and seriously jeopardises their chance of anything like a quality of life. This includes taking someone seriously to begin with even when you suspect they are imagining things or lying. Why? Because if you don't you might be wrong and there are ALWAYS ways to corroborate the truth. There are always evidence to prove or disprove anything. 

You do not have to be mentally ill to be treated unfairly, but once you have been so treated the likelihood is that you will be mentally ill for a very long time with all manner of trust issues if nothing else.

I am currently off work with work related stress and our Human Resources Department expects me to attend an Occupational Health assessment while I am ill. If I was a scaffolder with leg in plaster this would not happen and during such an absence the cause of the accident would be investigated and the risk reduced. Not so when it comes to stress at work which in itself is a form of mental illness. What is worse is that anyone with any mental health history has it continually raked over, dredged up as soon as they mention they are unhappy. Everything about that person is in question.

If a ‘normal’ person were to be subjected to the same treatment, then (call me crazy for this one), but I have a hunch they would end up with serious mental health problems. We will never prevent mental illness when the world continues to rake up everything that is painful to ANY individual. 

And what of the little boy who shouts that “the Emperor has no clothes!” sadly, whether you are mentally ill or not, if you don’t have means and you don’t have solid connections the reaction will most likely be one of resentment and intense wrath. No one likes it when it is pointed out that they have been foolish, far less those who have power. When that is done so publicly, as it is in the story of the Emperor’s New Clothes, and indeed in real life throughout the media, then guess what? The Emperor suffers mental anguish as a result i.e. mental illness.

"The most potent weapon of the oppressor 
is the mind of the oppressed." 

Steven Biko 

I have always advocated that anyone with a mental health history who wishes to speak out needs to do so anonymously to protect themselves, particularly when they are low, are poor and when they have no one to defend them. I’d like to update that. I would now highly recommend that for anyone who is not in a position of power with regard to any situation at all.

The real world is a troubled one. It is riddled with hypocrisy and it only takes a few, a very few to spoil this beautiful planet of ours. So it is wise, if not essential to be cautious, to be wary and if that means you need to be paranoid to keep yourself safe from harm, then be that too, but still speak out or we can never hope to rectify anything at all – just do it safely.

Take your time to trust people, choose your words carefully and your tone of voice and wherever possible only speak out about your issues when you are calm, fed, well rested and when the emotions are largely out of the way first so that you can think clearly enough to communicate. “We are never in control when we are angry” is something I have been reminded of recently and how true it is.

The exception is the professional teams who are there to help you (when you find a good one). With them write down what you need. Write down what you do not need. And only afterwards write down what has happened. That way you will begin to understand how to fix whatever it is that has gone wrong.

We can never remedy anything without facing it and we all make mistakes but it is very much what we do about them and in the how we fix them as well as who helps that really makes the difference. A former GP of mine said, “Do not dismiss support from unlikely sources as just occasionally they can be the very thing you were looking for.”

Luckily my new doctor is turning out to be fabulous, so fabulous in fact that he promises to read this blog site and being head of the practice, he’s already had a word with the receptionist that I found so exasperating. So you see, you can get help if you are prepared to want it enough and fight for it enough. Though I must say, it comes to something when you have to know more than those who are supposed to be experts, (not that it applies to my new doc).

But what of the little boy in the story? What can he learn? He would be far safer to say “Is the Emperor wearing any clothes? Where is the proof?” And to do so privately, or send a note to the Emperor although even that may all to easily result in terrible retributions. Far better then to ensure that he has people to defend and protect him first before saying anything at all.

"We think sometimes that poverty is only 
being hungry, naked and homeless. 
The poverty of being unwanted, 

unloved and uncared for is 
the greatest poverty."
Mother Teresa

I am angry with the world and the older I get the shorter my fuse and the angrier I get with all it's very human errors which I make too because I am product of this world just as much as anyone else - but I refuse to take the blame for all it's mistakes on my own. I own up to mine and do my best to rectify them as soon as I can. Why doesn't everyone? It amounts to about 200,000 thousand years of human errors so far according to the Smithsonian Institute, somewhat shorter if you believe in God but its still between 2-6 thousand years. The trouble with anger is that it ultimately only ever serves to destroy those who are angry. The remedy to that is never to act when one is angry but to let those feelings run their course away from others and subside. If there is a God then surely we should focus on the ethics and not the origin of our species to get the recipe right, because either you cut it ethics is the key to us all being able to co-exist peacefully.

I can only hope that all Emperors (and Empresses for that matter) have the good sense to listen to small children some day and that that day will be very soon for all of us. I hope too, and firmly believe that honourable people will always say thank-you, sorry, make amends and recompense those injured of their own volition and will do so privately for what is their part in causing such misery and suffering. What is so often the case is the errors made are nothing more than a silly, petty error of judgement which we all are and can be guilty of. When all is said and done, it is the con men that pretend to be tailors beyond compare that ought to be reigned in, if not punished... is it not?

We are all complicit when allowing the con men of this world to get away with their villainy - the courtiers, the general public and the little boys who see the truth but say nothing. High time I think, that the whole world stopped and thought about what advice it is actually seeking, who from and why they are seeking it; as well as what its aims are, and how to sensibly and above all, safely, proceed.

"The weak can never forgive.
Forgiveness is the attribute of the strong."
Gandhi

I could cite hundreds of pearls of wisdom if not thousands from around the globe, from every century, from every culture, race and religion and age group on this planet but I'll close with this final quote from a man that managed to save three lives that we know of. Just three but if we could all do that then there would be no unnecessary anger or deaths. We can never eradicate death or suffering. People die of natural causes, from disasters as well as from malicious intent and silly errors but we can certainly minimise the risks if we keep fighting to get that little bit closer to increasing compassion for those that are left behind trying to fight. With compassion comes a little bit more sense, a little bit more humanity and above all else... HOPE for absolutely everyone.

"Let's work the problem people. Let's not make things worse by guessing." Gene Kranz

I have a hunch Gene Kranz's words have just saved a few hundred more lives... if not more.

PS: I have to confess that the last three articles in particular have had a lot of input from others for me to be able to write them. Sadly I have, since writing this article learnt of someone who is so traumatised by the DWP benefit system that they are selling their belongings to get money to buy food as they refuse to go back on benefits. I used to be proud of being British, today I am not. 
I would particularly like to thank an anonymous retired psychologist in Australia for their support at this time, not least for giving me the courage to continue to write. As before, early signs are America is reading and the UK is disinterested. OK it's a bigger country, but this is a UK problem right? Or is it quite possible global?

Please do not expect me to blog for a while... I feel the need to rest, but if it's that important...

Thank you for reading and caring enough to do so.