Living with a mental health diagnosis as an adult and 5 tips to help you manage
(audio version of the blog)
This blog focuses on mental health illnesses but much of it can be applied to a neurological or developmental diagnosis, such as Autism, Dyslexia or ADHD*, which can be accompanied by similarly complicated feelings and stigma.
Being diagnosed with a mental illness as an adult can be particularly difficult. Many mental health (and neurodevelopmental) diagnoses are made in childhood, like Attention Deficit Hyperactivity Disorder (ADHD), Eating Disorders, Depression or Psychosis. ¾ of mental health illnesses start before a person is in their early 20’s.
If a mental illness goes unnoticed until adulthood, a diagnosis can be accompanied by plenty of contradictions. A diagnosis can feel like a relief, explaining why you have struggled with relationships or work, and many of your life experiences may suddenly make sense, but it might also highlight the ways in which you have been misunderstood or neglected by people close to you.
Even if you suspected you were living with a mental illness for a while, having it confirmed by a healthcare professional can create a range of emotions. Diagnosis can also come with a lot of societal stigma. This can mean big or frightening conversations with family or work that feel overwhelming.
Did I do something wrong?
A diagnosis in adulthood can make you look back and wonder if you did something to cause a mental illness. Close family members can blame themselves too. It is human nature to want to understand why something has happened. The truth is that everyone can be vulnerable to mental illnesses. You are not to blame. 1 in 4 people experience a mental health problem in the UK each year (McManus, 2009) and, while a mental health problem doesn’t necessarily lead to a diagnosis, it is far more common than you’d think.
External factors can contribute to mental health difficulties. Once again, you are not to blame for them. Some examples of external factors could be:
· Stressful events – traumatic events, conflict or loss and bereavement.
· Stressful life situations – Unstable housing, sustained trauma in childhood, unemployment or poverty.
· Additional health problems – long-term physical health issues.
Other external causes of mental health problems can be complex societal issues, such as social exclusion or racism. Being part of a group that experiences systematic prejudice (like POC or Irish Traveller / Romany communities) can lead to a higher risk of experiencing trauma, physical and mental health inequalities and social injustices.
A snapshot of social inequality and poor mental health
LGBTIQ+ people are 2-3 times more likely than straight people to report a mental health problem (Journal of General Internal Medicine, 2015). 23% Black or Black British people experience a common mental health problem each week compared to 17% of White British people, (McManus, 2009). Gypsies and Travellers are 2x more likely to be depressed, 3x more likely to experience anxiety and 6x more likely to die by suicide than the general population.
Overlapping or intersectional issues, such as experience of the criminal justice system, homelessness or substance misuse, are also massive risk factors for mental health problems.
It is essential to realise that these statistics do not show that minority groups are predisposed to mental health issues, rather societal prejudice and systematic racism cause mental health issues, alongside the overdiagnosis of POC.
Why did it take so long to get a diagnosis?
Psychiatry and psychology are relatively new medical practices. It could be that when you were a child there wasn’t enough general knowledge about mental health conditions and professionals in your life (teachers or GPs etc.) didn’t know what signs to look out for. Children are good at adapting to the environment around them, you might have decided (consciously or unconsciously) to adapt or hide your poor mental health because of stigma or the fear that disclosing a mental illness could make your situation worse.
Sometimes, if your parents or carers also have mental health issues, this can normalise behaviours caused by a mental illness. It is only when you get older and connect with people outside of your family that you realise you’re living with a diagnosable condition.
While a lot of mental health difficulties start in childhood, not all of them do. Events can happen in adulthood that lead to mental health problems, or it could simply take a long time to acknowledge you are living with a diagnosable illness.
Will I be Sectioned?
The fear of being Sectioned or being ‘put on Section’ runs through so much of our popular culture, as does the stigma attached to it. From children’s animations to TV shows to theatre and film. Being Sectioned is often used as a (lazy and problematic) creative device to indicate someone is dangerous, scary or in some way less-than or flawed. These fictional depictions of being Sectioned are just that: fictional! Like urgent in-patient care when we suffer physical health problems, being Sectioned is similar for our mental health.
While I cannot give you an indication of whether you may need to be Sectioned in your life, I can give you some basic facts to cut through the stigma, fear and general nonsense:
Being Sectioned means being kept in hospital under the 1983 Mental Health Act if your own health or safety are at risk or if you are a risk to others.
Being Sectioned is viewed as a last resort, you first need to be seen by a group of healthcare professionals.
While you can be stopped from leaving hospital care when you are under Section, you do have some rights. You are entitled to your Sectioning paperwork, you have the right to complain or appeal your Section, the right to have access to a telephone, and to receive advice from an IMHA (Independent Mental Health Advocate) who can explain how to be discharged and other rights-based advice.
Once Sectioned, you are able to challenge the decision if you want to!
You can be an in-patient at a hospital for mental health reasons and not be under Section.
This is a very brief look at being Sectioned. I have worked with many patients who have been Sectioned, before, during and after my work with them. Some are Sectioned for 72 hours, some for much longer. Many of these patients leave hospital to go on and lead fulfilled, meaningful lives. Being Sectioned does not define you and neither does your diagnosis. More information can be found in this MIND PDF information sheet.
What if my diagnosis doesn’t feel right?
You might feel that a diagnosis doesn’t match your experience of the problem, or social stigma may make it hard to fully accept a diagnosis. It can take time to view your condition through medical terms, rather than as a lived experience. For some people a diagnosis can be comforting, providing a roadmap of how to manage their illness, while others can feel restricted by it.
What can help?
Here are some tips you might want to consider when navigating a new mental health diagnoses:
1. Find clinical support you can trust. A trusted psychology or psychiatry professional can be very important. They can explain the medical jargon as well as be a trusted source of information. It can help to make a list of questions before a consultation or appointment, so you get the information you need.
2. Find support groups & charities. Connecting with other people who have the same or similar diagnoses can be a massive help. Not only will they understand what you are going through, but they are likely to have plenty of tips and life-hacks to help.
3. Non-clinical support. Non-clinical self-care and distractions can help. Hobbies, such as yoga, walks in nature, or online gaming, all help. Likewise, making a crisis plan for when things get hard is a good idea. Include things like The Samaritans helpline, favourite pieces of music to listen to, or comfort films to watch.
4. Help people close to you to help. Communicate what you need (and don’t need) from those close to you. Don’t feel silly if you need to prepare a list or write things down; if it helps you communicate your needs then it is worth doing.
5. Discover what a diagnosis means to you. As I mentioned before, some people feel that a diagnosis is useful, even a relief. It can help them chart out a care plan based on evidence and with mental health professionals. To other people, a diagnosis can feel suffocating and they don’t want to define their experience by the DSM, (Diagnostic and Statistical Manual of Mental Disorders). Find a way to make it work for you.
How do I move forward?
Many clients come to me wishing to explore what a diagnosis means to them. Dedicating some time in therapy to sort through these feelings can be massively helpful. It is important to remember that there is life after a diagnosis. You have made it to adulthood in a world not designed to accommodate many mental illnesses or non-neurotypical people. This means you have struggled in a way other people have not had to. It shows how resourceful and resilient you are. Hopefully, over time, a diagnosis can become something you use to become even more resourceful and create even more sophisticated tools to help you navigate the world around you.
Further support and information
*Autism is not a mental health illness. It's a developmental condition that affects how you see the world and how you interact with other people. However, I have included it as many of my clients struggle emotionally with a diagnosis of autism in adulthood. This can be particularly tricky as a lot of harmful myths and stigma exist about autism and emotional expression. Like autism, dyslexia is not a mental health problem, it is a learning disorder that can be accompanied by complicated emotions after a diagnosis in adulthood. ADHD is usually first diagnosed in childhood and often lasts into adulthood. People with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.
Kessler R, Berglund P, Demler O, Jin R, Merikangas K, and Walters E (2005) Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry, 62, 593-602
McManus, S., Meltzer, H., Brugha, T. S., Bebbington, P. E., & Jenkins, R. (2009). Adult psychiatric morbidity in England, 2007: results of a household survey.
Journal of General Internal Medicine (2015), Sexual Minorities in England Have Poorer Health and Worse Health Care Experiences: A National Survey.
McManus S, Bebbington P, Jenkins R, Brugha T. (eds.) (2016). Mental health and wellbeing in England: Adult psychiatric morbidity survey 2014.