The impact of diagnosis and of diagnosis change – a consultation with people with lived experience.

Royal college of psychiatrists

Winter meeting

Friday 31^st January 2025

Radisson Blu Hotel, 301 Argyle Street, Glasgow

Graham Morgan

The impact of diagnosis and of diagnosis change – a consultation with people with lived experience.

Hello;

This talk originated from  correspondence with the wonderful Arun Chopra but also as part of my role as an engagement worker at the Mental Welfare Commission when I was discussing it with about 100 people  with lived experience.

I will talk about the impact of diagnosis on me and on others. Kirsty will be giving a carers perspective after me.

My central message today will be  that this issue is more important than an  intellectual discussion : the impact of diagnosis affects people like me in ways which can fundamentally alter our lives.

A short consultation can shift the moorings by which we define our entire sense of self and the ways in which we live our lives or fit into societies expectations of us.

I was first diagnosed with Borderline Personality Disorder and then later, was re diagnosed with Schizophrenia.

I now have a diagnosis of paranoid schizophrenia  On one hand I hate this diagnosis, as after all the publicity of Mr Calocane in Nottingham, I worry when people find out my diagnosis and that  I also don’t like to take my  medication, that they will view me as a terrible irresponsible monster who society  needs  protected from.

I have seen so many news reports that reduce the status of people like me to something slightly worse than scum this year, that I now question many of my previous assumptions that generally, I am a kind and caring person.

You may say this has nothing to do with medicine and diagnosis but it has everything to do with it; being diagnosed by you has repercussions way, way, beyond the medical treatment you prescribe.

I am desperate to believe in this diagnosis. To finally accept that this is a real illness would be a huge relief and would take away some of the intense shame I have about my life.

In my travels, most people have welcomed  their diagnosis, especially  those who are neurodivergent. It has helped give an explanation to much of the pain and hardship that they have experienced. It means they do not have to blame themselves entirely for all the problems they have experienced or which other people have felt they caused.

At the minimum it gives them access to the treatments they would not have otherwise got, which of course can be life changing.

It can help family and friends. I know it did with my parents. I somewhat predictably blamed my parents and said they were the ones who had provoked my suicide attempts. It is only much later in life that I have learnt of the anguish this caused them and, in comparison, understand the solace when I was labelled with an illness that they could at least try to understand.

Diagnosis also gives us access to a host of other things. It helps us access benefits; a life that is almost unendurable can gain some quality when we have enough money. Being able to heat your house even occasionally have a treat is just as important for our mental health as a regular visit to our CPN can be.

I remember someone telling me how her life changed when the diagnosis of mental illness was changed to ADHD; now she understood why life was the way it was and could not only adapt to this new information but start to live differently. It can lead to us gaining the confidence to make demands for reasonable adjustments in our workplace, in fact adjustments from everyone.

We realise we no longer need to tear ourselves apart with the shame of it any more. It is something tangible and real and not some moral failing.

It also gives us access to a community of peers. Many people do not automatically identify with their peers but for some of us this connection is wonderful. To be with those who get it; who we do not have to pretend to be something different in front of. This is beautiful.

For others, the positive or negative of diagnosis is not the issue but what is an issue is that it changes our life fundamentally. It can determine whether we choose to have children and whether we dare to have friends. It can make the difference between us going out or hiding in the house. Revealing it can be the first thing we think of when we meet new people and the first thing our family and friends think of when we go through the ordinary ups and downs of life. It affects our sense of self-worth, our confidence, our ambition; the things we will risk doing and those we will no longer do. It fundamentally alters how some of us see our future. Likewise, those who love us may reevaluate their dreams and hopes for us all over again.

These things can be both positive and negative.

However I also hear people say ‘How on earth does it help if am diagnosed with, say dementia, when there is nothing I can do about and very little anyone else can do about it?”

Others do, of course, repeat the ‘Labels are for jars, not people’ mantra. They feel that diagnosis can only limit and mean that people’s humanity is dismissed; that they are viewed more for their impairments than for any other reason.

Other people are, as I have said, very aware that many diagnoses come with prejudice and judgement. There is already a growing campaign about the use of the diagnosis of personality disorder which, for so many people, has had a devastating effect. It can come with a raft of judgemental assumptions, the denial of services people used to get, the insistence on personal responsibility when they just can’t cope, the dismissal of their opinions and beliefs and judgement. I meet so many people who say the attitude of professionals and others has changed utterly after this diagnosis. They say their very sense of self is questioned and found faulty. Some people say that the use of this diagnosis is inherently damaging and often inaccurate, or not even valid at all.

Yet I have also met people who have welcomed it and said it was the only thing that helped them understand themselves and led to techniques to find a better and more fulfilled life.

The downside of diagnosis? In Jeans Bothy (A resource centre I go to) we held an event where one of our exhibitions was of the images that AI generates if you ask it to provide images of certain diagnoses. In effect a sample of how the connected world, views people like me.  Some conditions; such as depression and anxiety have unremarkable images but when we get to schizophrenia and bipolar and Autism we see some strange and very worrying pictures of people like me; realising that this is how most of the world views us can be very difficult.

Of course there are the practical downsides to diagnosis. It can become almost impossible to get into work with some diagnoses, despite the legislation that protects us. Stigma and discrimination is a very real and very cruel reality and as your own research in the College shows, is very high for people with a severe mental illness. It  can, among other things, influence where we live, the income we are likely to get, the education we will likely attain, the friends we make and the company we keep and the intimate relationship we end up in. It can be the difference between being accepted and excluded in our community. It can be the gossip at the water cooler which may be about us and how we don’t fit in. It can determine how people see our intelligence and skills. It can determine whether we dare go abroad. I choose to travel without health insurance because I could never afford that and that worries me. It can also determine whether we can enter some countries. For instance as I am on a CTO, I can’t get a visa to go to America. It can  also determine our occupation. Some jobs are just not accessible to us anymore; we are not allowed to do them.

It is not your responsibility to determine how society responds to mental illness; either from its prejudices  about people like me or from it’s perception of the impairments that can limit our life which can easily flow in and out of discrimination but you are very much part of the conversation.

And now I will finish with a short but possibly vital point  to consider for your practice.

Occasionally I meet groups of people whose doctor seems to have got stuck in a new trend to  re-diagnose, so from a psychotic illnesses to e.u.p.d.  or bipolar to trauma influenced traits and sometimes they may be right. Many of us know that diagnoses and knowledge is subject to change and that life changes but sometime they aren’t right and sometimes people do not consider the impact of changing a diagnosis.

We might have  adapted our entire lives; our activities, identities, self-perception and community in the light of what we were told, maybe decades ago, by someone like you. It may have taken us years to carefully find a life we are, at least moderately content with; which is often defined by our treatment and our medication and what we have been led to believe life with this illness is usually like.

So, when we walk into a doctor’s office and walk out later with a new diagnosis and new medication or maybe no medication, you have not made a simple clinical decision. You have altered everything some of us hold to be true about ourselves.

It can be like an earthquake has hit us and can be utterly bewildering and sometimes when, as does sometimes happen, you have got it wrong; maybe because you are a locum and don’t know us at all and are having to diagnose over  a video link. When you get it wrong and our treatment is then wrong as well, well; then we may relapse and return to a world we thought we had finally left behind and for some of us that is the end of our world literally, and  in some ways, also the end of the world of those who once loved us with all their hearts.

So when you get excited by the vibrancy or not of the debate about whether diagnosis is good or bad, meaningful or not; oppressive or liberating; remember not to get so excited you forget the consequences when you see us in your office and begin to assess us. A change in diagnosis may  change our lives wonderfully; it can also remove any sense of stability we have dared to build up over the years.