Breaking the stigma: dual diagnosis awareness is crucial during Mental Health Awareness Week
Breaking the stigma: dual diagnosis awareness is crucial during Mental Health Awareness Week
Miles, National Expert Citizens Group member
Dual diagnosis, when someone is experiencing both mental-ill health and problems with drugs and/or alcohol at the same time, is an issue that affects a lot of people accessing either drugs and alcohol or mental health services. Yet it rarely gets the attention it deserves. For Mental Health Awareness Week, Miles, a member of the National Expert Citizens Group, shares his experience of dual diagnosis and highlights the need for holistic support for those experiencing it. The National Expert Citizens Group (NECG) acts as a representative group for people facing multiple disadvantage, to make sure those with lived experience are able to shape the systems and services that directly affect them.
Dual diagnosis is a term that I learned to live with. To me, it felt like a life sentence for a while, like the final curtain. I was addicted to alcohol and my mental health was atrocious. I often felt that services would see me as someone who was too complicated and difficult to deal with because of my dual diagnosis – when all it meant was that I suffered from multiple issues. Evidence shows that a large majority of people accessing drug or alcohol treatment also struggle with their mental health and are at higher risk of other health problems and early death[1]. But they continue to be excluded from services.
Most mental health and drug or alcohol services continue to operate entirely separately, meaning many like me end up unable to access support because we do not perfectly fit into either service’s criteria.
I guess you could say I had a ‘normal’ upbringing, like many other people. But I also grew up in an alcohol-fuelled home that was awash with emotional and mental abuse. In my teenage years, I had made my way overseas and was just coming to terms with my sexuality – it was a different arena for LGBTQI+ people in those days. When my beloved parent passed away suddenly, I didn’t really do any work on grief – that was simply unheard of, or unavailable, at that time. I was to be rushed off to university, and that was the start of my journey into alcoholism. I saw alcohol as something that could relieve the anxiety, the grief, and help with my social life. This was exacerbated by the absence of promotion, support or recognition of sobriety and little else for LGBTQI+ people.
It was in my early twenties that the ball dropped, and my problems with alcohol became more difficult to manage. I had a complete mental breakdown, which made me feel completely overcome by something I could not explain… I was lucky to have family and friends who supported me, but the help didn’t come from services. Over the years, alcohol and mental-ill health started to mix. For me, experiencing problems with alcohol and your mental health is like seeing two people that are best friends, yet totally unsuitable for each other. When in unison, it put a wrecking ball through my life. It is hard to tell where one ends and the other starts, and apparently very hard for any support services to deal with – never mind the individual. Lacking support for my dual diagnosis, I reached a point of complete brokenness – by the age of 32, I was homeless, alcohol-dependent, and battling suicidal thoughts, all of which resulted in frequent hospitalization.
As soon as I had my diagnosis, I could begin to look for the pieces of the jigsaw. With dual diagnosis, I learned to believe the saying that ‘what doesn’t kill you makes you stronger’. Of course, this is not to say that once you get your diagnosis, you should be put in a ‘box’ and left to deal with your issues on your own – which is what I felt like for a long time. Being passed from pillar to post between separate services without any of them being able or willing to help you is frightening, exhausting, dangerous and only wastes resources. In my case, it meant more time in ambulances or police cars. I was constantly hearing that ‘it’s never too late’ and ‘things will get better’ or ‘there is hope’, and I have to admit that I still get frustrated when I hear people bash about the old ‘it’s ok not to be ok’, because it is not. We shouldn’t have to suffer and wait and hope for a miracle and be accepting when basic human needs are not being met.
Dual diagnosis, multiple disadvantage (which is when people experience another unmet need, such as homelessness) and everything in between can happen to absolutely anybody. This is something we ought to never forget. I am lucky I had a few friends and professionals I could count on during my journey towards recovery, but I loathe that a person’s livelihood and life itself can depend on luck.
There is so much more we can do to improve services. To me, an ideal support service would be holistic in its approach.
We can only start the work on dual diagnosis if people are safely housed in their own space, with access to physical healthcare, healthy food and showers. Once these fundamental needs are met, then the person should be given all the time they need and deserve to address their mental health issues, with therapies, medication, if needed, and full, thorough support. Alongside this, reduction and/or abstinence from substances should be carefully considered and always carried out in combination with the mental health intervention. This should really be the standard for services that come into contact with people who experience dual diagnosis and multiple disadvantage.
For this to happen, we need to create spaces for people with lived experience to drive the change that is needed. One of the best things I’ve done, in what will be an eternal period of recovery, is to be a part of the National Expert Citizens Group (NECG). Being a NECG member has given me a chance to share my experience and speak out about the issues we all have faced and continue to face, which really helps – for example, by speaking at events and to people in power. It is not only a fantastic educational opportunity, but also a fun way to add my voice to an important cause and meet new people. I would encourage anyone who has gone through something similar and wants to use their experience to create positive change to join us.
The road of dual diagnosis is long and tough and, for me, always will be. But I really want to stress how important it is for anyone affected not to give up, and to keep knocking on doors. The support available to us is not good enough, and we deserve better. Better services and better lives – we will keep fighting for that.
For more information about lived experience opportunities, click here.
[1] It is estimated that 86% of people accessing treatment for alcohol use experience mental health problems, and 70% in drug treatment also have mental health difficulties. See Public Health England (2017), ‘Better care for people with co-occurring mental health and alcohol/drug use conditions’
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