Part of the Cestrian Dreams Project
Article author: Alwyn Ash
Where to turn when the professionals seem to turn their backs? This article will almost certainly worry some people. But it is fact that not everyone who suffers with a mental illness is being supported correctly or efficiently by a local mental health team in the UK. What follows is a personal account of the heartbreak that I have suffered whilst trying to reach out.
I have suffered with depression for as long as I can remember; I was certainly an isolated child, not wishing to mix, always more comfortable in my own shadow. Shyness, lack of confidence certainly has been raised, but what if it has always been something more than that? Not wishing to share too much about my life, it is fair to say that I never enjoyed the company of other children: I either felt bullied, disliked, or just a burden in general. My imagination kept me safe, far more relaxed just disappearing into a film or two and fantasising that I was a character within the plot, in some magical universe. The real world frightened me, I felt like I was drowning in a sea of noise, sights and confusion.
And, all these years later, not much has changed. I still regard the world as an alien landscape, the people who reside within it baffling and scary. I do not understand adult ways or thinking, and it isn't just a case of having to "grow up", not completely. I am a reasonably mature, sensible creature, with so much heart and affection. Sensitive, certainly, empathic, definitely. I therefore struggle to understand how people can be so cold toward others, or indifferent. Even within the professional establishment I have witnessed much indifference.
Some of you may be surprised to know that I have been sectioned, though voluntarily thankfully. Still, these experiences have left me feeling insecure and uncertain, distrustful and angry. I have been manhandled by a single police officer and handcuffed, have been described as being "backward" by a psychiatrist within the psychiatric hospital where I stayed, and have encountered neglect in the duties of professionals who continually fail to keep me in their sights whilst I await further treatment. Yes, it is acceptable that there is a waiting list (I can fully appreciate there are many who require help from these services), but should I have to keep reminding them that I still exist? Is it really far beyond their skills to keep patients informed regularly, via a letter or email? What does it take to make mentally ill people feel safe and secure? "Waiting" should surely never mean "invisible"...
One of the most appalling of facts is that I am yet to be diagnosed properly, or informed of any genuine diagnosis. Saying that I am simply "depressed" just doesn't cut it - not any more! The various issues that I suffer with cannot simply be explained away by such a lazy description of my condition(s). A psychiatric nurse has mentioned a "personality disorder" but no one has ever come forward and officially diagnosed this. Why not? It also annoys me that professionals judge by what they see at such irregular intervals and what they are told, though some are far more interested in giving their own egotistic opinions rather than listening carefully to what is actually being said. And even then, it is not easy for a patient to self-diagnose, or explain in such accurate detail that the professional has instant understanding of every aspect of the mental illness that the patient suffers with.
There is also the Patient Health Questionnaire (form PHQ9) that requires quick responses using a number system by which a professional decides if you are "depressed" or not. Ridiculous, quite frankly. I have had to fill in one of these forms often and the answers have always been the same. It had even been suggested by one professional that if my way of thinking begins to improve, and I accomplish things, then the answers on the form should reflect that - what he obviously fails to understand is that, mental illness fluctuates regularly, even with CBT (Cognitive behavioral therapy) skills to aid a better way of living. For mental illness there is no cure, but perhaps psychiatrists and psychologists do not understand this simple fact? What might well be a happy experience one day can easily turn into a nightmarish scenario the next, with thoughts of wanting to "get out" any way possible! How can a form possibly mirror that kind of imbalance accurately? Such a form must reflect that day's thinking, and nothing more...
It is easy to suggest that primary care mental health teams do not help anyone at all. But that assumption would be both wrong and unfair. My personal experiences are exactly that: my experiences. Many others have managed to find piece of mind, I am sure, with their local mental health representatives. And seeking help from a local authority is always recommended! However, I am in a limbo while drifting from one extreme to another, emotions and thoughts that rapidly take over and send me on a path to nowhere.
There are days when I am incoherent or confused (tweets on my personal account have reflected this), lost or overwhelmed with fear and anxiety. These are not just part of an illness that can be so easily shifted by CBT, there is far more to it. And it is far too dangerous for professionals to take all of this with a simple "fix-it" remedy, as some of them seem to believe. There is also the danger that my thoughts will lean toward believing that I am not ill at all, that I am just a faker demanding attention, a social recluse who refuses to conform and has simply discovered an excuse for "getting out". But then, any professional who considers the possibility is not worth their training. Thoughts can be misleading, especially where mental health is concerned, and that is where CBT works best: positive and mindful thinking! Still, what if emotions are just too overwhelming to identify the correct thoughts in time? Isn't that where medication comes in, to restore emotional and chemical imbalance?
My relationship with the Primary Care Mental Health Team has been one of doubt, distrust (even though I have tried to let people in), and further confusion. Lack of communication leads to more anxiety, and a feeling that mental health is not a priority at all. I had, at one stage, been given a screening appointment that the intended interviewer was not even aware of due to lack of communication within his own department - so (a) he was late for the appointment and (b) hadn't been expecting me at all! How can that make you feel anything other than unimportant, why should that give you faith in "highly skilled professionals"?
And, though some general practitioners are reasonably sympathetic in the UK, not all understand enough to be of any help, simply passing you on to a mental health team who you are supposed to call in person as preliminary contact; a GP will even refuse to make that all-important call on your behalf, no matter how nervous or scared you are. Sadly, during my life, I have engaged with some GPs who have shown no consideration or compassion at all, generally shrugging off a mental illness as something irrelevant and making the whole experience an uncomfortable one. I have even been asked by a male GP if I were gay (thankfully he is now retired), or suggestions raised that if I simply get over my lack of confidence, life would be better.
I guess another frustrating aspect of care comes courtesy of a local A&E department (Accident & Emergency). It is the one place people like us are advised to visit if we deem our present sense of state to be dangerous. Of course, they forget to tell you that waiting time to be seen by a member of a mental health team can be anything from one to three hours, as the latter has been in my case. During my last visit to A&E I was asked whether it was possible for me to just attend my GP surgery the following day - this was late evening, when my head was certainly mixed. Upon that invitation, I considered the idea. That is the danger also, someone allowing doubt to worm its way in. However reluctant my feelings because of this, I stayed. Regretfully, after that three-hour wait - each minute spent feeling that I should not even be there at all - and growing ever impatient and restless, the urge to leave won over. My absence was noticed, but by then anything could have happened.
I continue to wonder just what can be, or could have been, done to improve my experiences. Yes, finances are tight and staff shortages are difficult, but if one man's journey is made this difficult by a lack of understanding or care, then what hope is there, truly? Words such as "backward" stay with you; being man-handled by police absolutely scars you; and that lack of communication by the professional element tells you that there is no help available... that you are not worth their time... There is more, far more, that I could write, but delving into my past (even recent past) is painful. This is where I pause, for now. As I have said previous, life experiences are individual, and not all professionals are the same.
In everything I have faced these many years, the word "surrender" may come to mind but it never succeeds. Never let anyone belittle your feelings: mental health is as important as any physical illness, and you deserve to be treated accordingly, with compassion. We are all amazing people...
STIGMA (STOP THE IGNORANCE, GOOGLE MENTAL AWARENESS)
Cestrian Dreams was founded by Alwyn Ash in December 2012, with the aim of highlighting mental illness, raising awareness, and helping to overcome the stigma associated with the disease. Originally set up with its very own website, Cestrian has now been incorporated with Alwyn's personal site.
"1 in 4 will suffer with some form of mental health issues"
