To diagnose or not to diagnose
Between Channel 4’s Dispatches programme, Claudia Hammond’s radio 4 series ‘D for Diagnosis’ and my own personal work, the idea of diagnosis in psychiatry has come under scrutiny. I have had thoughts swirling in my mind for a while regarding diagnosis, both on a personal level and on an professional level. I’ve put some of them down, but I am aware that people have very strong views on this topic. I want to stress that this is MY opinion, which I am entitled to, and not an attempt to antagonise any feuds.
Let me start by saying my diagnosis history has been described as ‘someone got drunk opened up the DSM and randomly started picking out labels’. From clinical depression, generalised anxiety disorder, to psychosis, dissociative disorder, anorexia nervosa, borderline personality disorder, at one-point bipolar disorder, and more that I can’t even remember. In the 8 years I have been in the care of mental health services I have had diagnoses given to me, taken away, re-given to me, each doctor had a new theory, a new diagnosis, a different label to my symptoms. It took me a while, but I have come to the conclusion psychiatric diagnoses are educated guesses at best, with each doctor having a different way of drawing up conclusions. It is for this reason I no longer care what it is I am diagnosed with; I simply say I have complex mental illness.
However, if I remember back to when I was 14 years old, the beginning of my journey with mental illness, all I wanted was validation and acknowledgement. I wanted people to see and understand that I was really struggling, that I was in pain and couldn’t cope. I needed people to say that they saw my pain, that it was real, and that it wasn’t my fault. Even having little to no understanding of mental illness at that age, I knew the way to get validation was to get a diagnosis. So, I eagerly waited for mental health services provided me with a diagnosis, which they did.
But it didn’t solve my problems. Instead it meant I lived in the narrative that I was sick, and somewhat hopeless. Having a diagnosis during my teenage years, the years in which we are supposed to figure out who we are, meant that I absorbed my diagnoses into my idea of who I was. It didn’t empower me, or trigger services to provide appropriate support. It just meant I was exactly the same young girl who couldn’t cope, just now with a label on some hospital paperwork. Being diagnosed didn’t validate my experience.
Looking back, I shouldn’t have needed a diagnosis to validate my experience, I should’ve had the appropriate care and treatment based on my experience not the guess work of a doctor. Given my long list of diagnoses, I don’t fit into any of the treatment boxes. Services are set up to provide specific treatments for each diagnosis, a neat way of ordering things. This system works for physical illness, but not for mental illness. Mental illness is not solely a biological ‘problem’, it is a complex interaction between environment, behaviour, personality, genetics, upbringing, life events and more. What this means is that although a collection of symptoms in two people may be the same, each person will have a different reason or underlying mechanism to those symptoms. So, a standard treatment, for say clinical depression, doesn’t make sense.
I am now in a position of being able to look at this from both a personal and professional point of view. I see young people giving themselves labels of depression, anxiety disorder or even bipolar disorder. I am in no way suggesting that they are not in distress. The levels of legitimate and painful distress among children and young people right now is terrifying. But it really worries me that the narrative young people have been fed is that they must be sick. These young people are exactly as I was 8 years ago seeking validation and acknowledgement of their pain. I find it quite upsetting that children and young people feel the only way they will get that acknowledgment is if they have a mental illness. I think it says something quite stark about our society.
Unfortunately, the system we have set up only recognises distress in the lens of illness. The only way to get health services is to have a diagnosis, the only way to get social care is to have a diagnosis, they only way to get financial support is to have a diagnosis, the only way to get educational support is to get a diagnosis, the only way to get people to take your pain seriously is to get a diagnosis. Of course there is a drive to diagnose.
What I want for these young people is for their distress to be taken seriously, in the context of their experience. Services shouldn’t be, in my opinion, gate-kept based on diagnosis. We need a revolution in how we view mental illness and distress, and how we treat and care for those who are experiencing symptoms traditionally labelled as specific mental illnesses. If I had entered services at 14, been able to speak to a professional whom acknowledged and validated my distress and set up a treatment plan based on my experiences instead of a diagnosis, I truly believe my experience would have been smoother and more empowering.
By the way, I am not saying mental illness doesn’t exist – it does. I still say I have mental illness because my symptoms are not normal reactions to bad situations. My symptoms fall under the banner of being abnormal thoughts, feelings and behaviours. What I no longer do is try and fit my symptoms into specific boxes.
In my professional eyes, I am seeing increasing amounts of medicalising distress. I bring your attention to ‘mental health awareness’ campaigns what they have actually been is ‘mental illness awareness’ campaigns. Don’t get me wrong these campaigns have done fantastic work to reduce stigma and discrimination of mental illness. These campaigns have focused on mental illness, which has somewhat skewed public perception, in my opinion. It is now thought mental illness is just the generic term for stress or emotional distress. Which it isn’t. I think it’s time now we had true ‘mental health awareness’ campaigns, by which we teach people how to stay well and cope with the natural and normal ups and down of life, and move away from medicalising distress. I am not saying that people experiencing distress should ‘pull their socks up’ and deal with it, they do need support. But the way we frame that support, the context we use needs to change.
My last point I’d like to make is that neurodevelopmental disorders seem to have been dragged into this debate. I want to make it clear Autism and ADHD are NOT mental illnesses. They are neurological differences not mind/mental differences. Neurodevelopmental disorders have legitimate basis to diagnosis because they are physical differences in how the brain is wired. The brain and the mind are two different things. I am of the opinion that autism and ADHD as neurotypes could potentially in the future follow the same pathway LGBTQ has gone down. Being gay was originally listed in the DSM as a disorder, but obviously that has changed as society has moved on (in most places in the world). I think in the future Autism and ADHD could go the same way; being seen as neurotypes and not disorders as society becomes more accepting and accessible. However, right now I see it as important to diagnose Autism and ADHD because it allows people to understand themselves. Which, by the way, I know many feel the same way about mental illness, which is valid point.
I’m not quite sure how to summarise what I have said here. I suppose these are my thoughts gathered from years of personal and professional experience. I was part of a survey that asked children and you people about mental health. An overwhelming number of these young people said they just wanted someone to talk to. Why can’t we give them that without having to give a diagnosis to them all?