Do I need a Mental Health Diagnosis?
Dr Joseph Barker
As a Clinical Psychologist the topic of diagnosis is one that comes up often for the people I work with. People may have been given a diagnosis by another professional and want to know more about it or check it’s right. They may have heard about a particular diagnosis that seems to fit their experience. As we approach mental health awareness week it’s worth considering how far we’ve come in having conversations about our mental health, but also that mental health diagnosis are no longer words shared only between ourselves and our clinicians. Whether it’s in conversations with friends, on social media, or even in advertising campaigns, mental health diagnoses have become a far more common part of our day-to-day language. As these terms become more common in our lives, I wanted to share some key facts, myths, and suggestions to make sure diagnostic labels are a helpful rather than harmful part of the conversation.
What is a Mental Health Diagnosis?
A diagnosis is a medical term that describes the cause, nature, and expected course of a disease or problem. Let’s take chicken pox as an example. We know it’s caused by a specific airborne virus that we can test for using an antibody blood test or swab. We know its nature is a viral infection that causes skin irritation and spots. We also know its’ course is usually an incubation period of 10-21 days and symptoms usually improve within 1-2 weeks.
A mental health diagnosis is a little different. To date we don’t have any biological test or method that will tell us if an individual has a mental health difficulty. There’s nothing we can see under a microscope, or brain scan (fMRI), or blood test that will tell us if a person has depression or OCD or any other mental health difficulty. People are incredibly complex and mental health difficulties arise from a complex interaction between biological (and genetic), psychological, and environmental (social) factors.
So instead, we diagnose mental health difficulties by their symptoms. In other words, we have a list of possible mental health diagnoses (just under 300), and a list of symptoms that a person must be experiencing to meet the “criteria” for each diagnosis. There are two main diagnostic systems used worldwide with lots of overlap. These are the “International Classification of Diseases” (ICD-11) and the “Diagnostic and Statistical Manual of Mental Disorders” or DSM-V. These classification systems are a list of all official mental health diagnoses and the criteria that someone should fit before being assigned that label. Let’s look at the DSM-V criteria for depression as an example.
Depression is defined as the presence of 5 or more symptoms from a list of 9 symptoms, during the same 2-week period and where at least 1 of the symptoms is depressed mood or loss of interest or pleasure, most of the day, nearly every day. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. The 9 symptoms are:
depressed mood
loss of interest or pleasure in almost all activities
significant (more than 5% in a month) unintentional weight loss or gain or decrease or increase in appetite
sleep disturbance (insomnia or hypersomnia)
psychomotor changes (agitation or retardation) severe enough to be observable by others
tiredness, fatigue, or low energy, or decreased efficiency with which routine tasks are completed
a sense of worthlessness or excessive, inappropriate, or delusional guilt (not merely self-reproach or guilt about being sick)
impaired ability to think, concentrate, or make decisions – indicated by subjective report or observation by others
recurrent thoughts of death (not just fear of dying), suicidal ideation, or suicide attempts.
To give a diagnosis of depression, a clinician will ask some questions to understand your difficulties, may complete some questionnaires, and will consider your history and other sources of information. They will compare all the information to the DSM-5 criteria for depression and decide if this diagnosis is applicable.
Are There Any Problems with This?
Yes!
Looking at the DSM-5 criteria for depression, I think it’s fair to say most of us will have met this criteria at some point in our lives. After a breakup, bereavement, job loss, or other challenging life experience. Being given a diagnosis can tell us that the way we feel during one of these events means we have an illness, and our normal human response isn’t normal at all. It can make us feel like there’s something wrong with us and we shouldn’t be feeling the way we do (all things which have been shown to contribute to and maintain depression). Lots of research studies support this. For example, up to 70% of those surviving domestic violence experience depression. If the majority of people have the same response to a particular experience, should they be considered to have an illness?
For other people they may only experience four of the listed symptoms (below the required threshold of five) but be incredibly distressed by the intensity of the symptoms they do experience. Hearing that they do not “fit criteria” or “meet the threshold” can be incredibly invalidating and isolating. It can make it feel like our distress has less credibility if we need time off work, want to share how we’re feeling with our friends, or want to seek support. It’s really important to say that not meeting the criteria for a particular diagnosis does not mean we are suffering any less.
There are lots of words that are often treated as diagnoses like “anxiety”, “eco-anxiety”, or “relationship OCD” just to name a few I’ve come across this morning. Just because they are not official diagnostic labels it does not make these experiences any less distressing or mean we should not access treatment. However, because there is no official definition, there’s even more of a danger of us being labelled as having an illness where our experience is really understandable. Being told we have “eco-anxiety”, rather than being understandably worried and scared about our environmental future, can damage our trust in our own thought processes and make our difficulties much worse. It can make it feel like we’re the problem. By the same token, with some many more labels becoming a common part of our language, it can feel like unless we have a definitive label for our difficulties, they will not be taken seriously.
The trouble is that mental health diagnoses are not binary in the same way that physical health diagnosis are. You either have the chicken pox virus or you don’t. Depression (or any other metal health diagnosis) on the other hand is a spectrum of human experience. A vast number of people who don’t technically meet the “criteria” for a mental health diagnosis would (and do) benefit from a range of support for their mental health. Equally many people who do meet diagnostic criterion may feel these labels do not fit their experience and the way they feel does not make them “ill”. To make things even more confusing, the official diagnostic categories we do have are far from perfect. They are frequently updated and have lots of overlap meaning two different doctors make give the same person a different diagnosis.
The misunderstanding between mental and physical health diagnoses can cause a lot of damage. People are often stigmatised as a result of their diagnoses and defined by their labels. We might hear or see phrases like “she’s bi-polar” or “that’s just his OCD”. We can start attributing all of someone’s successes, failings, and personality traits to their diagnoses. I remember working with someone with the label of bi-polar who had worked incredibly hard in treatment with me. They shared that every time they made progress in their life like finding a hobby, starting a degree, or dating, the people around them responded by telling her this was just another manic phase, and she should slow down. Imagine if every time you wanted to tidy your house, double check the door was locked, or go to bed at a consistent time, you were told “that’s just your OCD again”. When these labels are used to define us, we lose the agency over our actions, the progress we have worked so hard to achieve can be dismissed in a heartbeat, and the label can become something that maintains our difficulties. This stigma is maintained by a misconception that there is a clear boundary between being ill and well, or in other words that mental and physical health diagnoses are the same.
So Why Do We Use Mental Health Diagnoses?
For lots of people, the experience of receiving a mental health diagnosis can be extremely positive. It can make us feel like we’re not going crazy, lots of other people feel the same way, and we finally have an answer for how we’ve been feeling. Diagnoses give us a shared language to summarise our distress and communicate how we’re feeling. They can give us a sense of relief and make us feel validated, heard, and seen. Some mental health diagnoses also give us some indication of the sorts of treatment that might be helpful but it’s important to remember that every individual is uniquely complex, and we cannot say a particular treatment will be effective based on a diagnosis alone.
A good experience of diagnosis tends to be collaborative. Your clinician might offer a tentative diagnosis, explore what this means to you and explain why they think this might fit with how you’re feeling. Time to discuss if this fits with your own experience and consider alternative explanations based on your own thoughts and perceptions can be especially helpful. Conversely if a mental health diagnosis is unilaterally assigned without space to discuss the possible contributing causes, we are more likely to experience it as negative.
Remember that mental health diagnoses are made based on a number of symptoms, not a specific pathogen or physical change in our brain. Saying the cause of our worrying is generalised anxiety disorder is a bit like saying the cause of our sore head is a headache! A mental health diagnosis is a label for our experience but not the cause. For it to be useful we need it to give us understanding and point us in the direction of suitable support.
Who Can Give a Diagnosis?
A Clinical Psychologist (see what this is here) will sometimes talk about diagnoses but will usually put these in the context of a “formulation”. This is a fancy word for the process of gaining a shared understanding of your difficulties, which experiences have contributed to them, what maintains them, and how we might make changes. They will usually be more interested in your understanding of the diagnoses and making this useful to you than the diagnostic label itself.
Mental health diagnoses are usually given by a medical doctor in the first instance. For some mental health diagnoses, such as depression and generalised anxiety disorder, this may be your GP and for other diagnoses a referral to a mental health specialist such as a psychiatrist may be required. Doctors often have very little time in their appointments so sometimes so will sometimes give an initial impression or mention phrases such as anxiety, or OCD, before suggesting a referral for further support. This can be a really helpful first step in understanding our difficulties, but it can also be confusing and leave us unsure of whether we have been given an “official” diagnosis.
Do I Keep My Diagnoses Forever?
At this point it’s important to reiterate what a mental health diagnosis is. It’s a label that says at a particular point in time your doctor felt on the balance of probability you were experiencing difficulties that met the criteria for that diagnostic label. That is different to a physical health diagnosis (think chicken pox again) which has a definitive cause and explanation. So technically as soon as you no longer meet the criteria of a particular diagnosis it no longer applies for you. In reality, there is often no official appointment with our doctor where we are told we have been “undiagnosed”. The diagnosis is left on our medical record but it’s important to remember what this means. It means that at a particular point in our lives we were experiencing a particular set of difficulties. It can be helpful as it lets your doctor to look out for similar difficulties in the future and if a particular treatment was helpful before. It does not mean that we keep this label forever if it no longer fits us. Sometimes we do have chronic mental health difficulties and if it’s helpful the diagnostic label may keep fitting our experience over a long period of time.
Do I Need to Have a Mental Health Diagnosis?
Very unusually for a Clinical Psychologist I can give a concrete answer of no!
Very few services that offer mental health support in the UK require a diagnosis. Those that do will nearly always offer their own specialist assessment and only require an initial assessment from your GP or other referring doctor. These specialist assessments are far more likely to explain the diagnosis in detail, explore its’ possible causes and give suggestions for further support and treatment. Clinicians who offer psychological therapies almost never talk about a diagnosis without placing it the context of the whole person. So, there is no need to have a mental health diagnosis to access treatment and I passionately believe that no-one should be assigned a diagnostic label that does not fit their experience. It’s also important to know that a mental health diagnosis is not required for a mental health difficulty to be protected under the Equality Act (2010). This means your entitlement to reasonable adjustments is based on the impact of your difficulties, regardless of diagnosis.
While we may not ‘need’ a mental health diagnoses we may find one extremely helpful. Everyone has a different experience of diagnosis based on their beliefs, culture, previous experience and how the diagnosis itself is given. Diagnoses can give us the language and confidence to have challenging conversations with loved ones. They can help us feel like we’re not alone, give us hope, and lend us the validation we need to seek help.
Conclusions and Top Tips to Make Diagnosis Work for Me
To summarise, a mental health diagnosis is not the same as a physical health diagnosis. No mental health diagnosis has a single cause and we do not have any test that can definitively give a mental health diagnosis. A mental health diagnosis is a shorthand label that says at a particular point in time your doctor felt were experiencing difficulties that met the criteria for that diagnostic label. These diagnoses can be incredibly helpful when they’re shared collaboratively but they can also be harmful.
So my top tips are…
· Diagnoses should be discussed collaboratively and explained fully
· We shouldn’t be described by diagnoses unless we find them helpful
· Diagnostic labels should only apply as long as they’re relevant and helpful
· You should be able to ask your doctor if you have been given a diagnosis
· You do not need a mental health diagnosis to access support or justify your experience
A Small Call to Action
I have composed this article because as a Clinical Psychologist I have often worked with people who have not found their experience of diagnosis helpful. I don’t think diagnosis itself is the problem and a huge number of people have extremely positive experiences of diagnosis. Our understanding of it can however cause harm. We have come so far in enabling conversations about our mental health and often have to fight to have this recognised as equally important to our physical health. Diagnoses have become part of our common language and can be a way of us gaining recognition of how important our mental health is. But without truly understanding how mental and physical health diagnoses differ, this can maintain stigma, make our difficulties worse and stop us seeking the right support.
So, I’d really value your time if you felt able to gently share some of what you’ve learned (or already knew) with your friends, family, and social circle where it feels comfortable to do so. Please share this article if it’s helpful and let me know if there is anything else you’d like us to cover.
Dr Joseph Barker
Chartered Clinical Psychologist
Clinical Director
Konnect Clinical Psychology
About the author…
Dr Joseph Barker is a Chartered Clinical Psychologist with over 10 years training and experience in range of mental health services. Joe currently works in the NHS as a Senior Clinical Psychologist supporting people living with HIV, trauma, and long-term health conditions. Joe additionally trains Clinical Psychologists at the University of East Anglia with specialties in trauma and adult mental health difficulties. Joe’s award-winning research has been published internationally and he delivers training and supervision to a variety of qualified professionals. In addition to his doctoral level training, Joe has completed postgraduate qualifications in Health Psychology and Evidence Based Psychological Treatments and completed further training from world leading experts in Trauma Focussed Acceptance and Commitment Therapy, Compassion Focussed Therapy, CBT, and Psychodynamic Therapies. Joe is recognised as a Chartered Clinical Psychologist by the British Psychological Society and is registered with the Health and Care Professions Council (HCPC).