I have a mental illness. Between feigning normality and earning a living, I have to cope with stigma and prejudice every day.
If you think it's tough for you, try living it yourself.
It can be difficult for family members, friends, employers, and complete strangers to empathise with a person who has a mental health condition. Their behaviour may seem erratic, lazy, or even hurtful. It's something of a cliché to say that it's worse for the person who is living with the condition, although there is definitely an unaccepted truth that society doesn't consider the reality of having such a condition. Perhaps it's because a mental illness is less likely to have outward signs, or that it's easier to understand a physical pain than a mental pain, even if you've never had, say, a broken leg or a migraine.
So we reach an impasse where those with a mental disorder bear twice the burden; that of the condition itself, and the mismatched expectations of those around them. From the other side, it seems that the friend / relative / colleague is doing nothing to help themselves, and they're just being difficult and stubborn. It often ends with everyone feeling pain and dissatisfaction, and lost friendships, opportunities, and loves.
Just because you don't understand it doesn't mean it isn't so.
It doesn't have to be this way
No-one wants that to happen. While it may feel like that's not true when the whole world is against you (I know this feeling, I've been there), people generally don't wish harm upon others, even if they are a complete pain in the neck. Regardless of what people want, misunderstandings lead to conflict and animosity. So, why the misunderstanding? There are difficulties on both sides: it can be difficult to articulate what you're experiencing if you have a mental health disorder, and hearing about such a condition in language that you are familiar with might not make sense. Perhaps you can easily get out of bed in the morning, so why shouldn't everyone else? Maybe you're always on time and can't stand those who are always late - why can't they just play by society's rules? Every mental health condition, and every individual, is different, but there are some similarities in the effects on the lives of patients, carers, and wider society.
Ah! I get it!
— My reaction when I first heard about the spoon theory
It's a good explanation, but...
It doesn't work for everyone. Like all metaphors, it is incomplete. It is a good starting point for explaining one's own condition, and for giving others some sort of idea of the difficulties you face. But we need to elaborate on it. It's a reasonable approximation for a person's limited energy reserves (with some caveats), but it doesn't cover other aspects of chronic conditions, in particular mental health conditions. There are some behavioural issues that could broadly be considered "spoon shortages", but only if they are considered separately. And there are some that don't fit the model at all.
What are the misunderstood behaviours?
Poor timekeeping, avoidance of social situations, letting others down, jumping to conclusions, flying off the handle, locking oneself away from the outside world, avoidance of places, people or things, malaise, sleepiness, low mood, compulsive lying, inability to carry out fundamental tasks, reduced job performance, crying, apparent oversensitivity, hoarding, introversion, irritability, impulsiveness, over-inflated sense of self-worth, crippling self-doubt, taking forever to complete ordinary tasks, uncleanliness and untidiness, poor self-care, nitpicking behaviour, constant agitation, fidgeting, vocal and physical tics, weight problems, disordered eating, pickiness at mealtimes, constant vigilance, excessive checking, poor concentration & memory, catastrophizing.
And that is just a cursory synopsis. As well as there being more symptoms than just these, all of the above can also be exhibited by a person who is not mentally ill. We should note that the only person qualified to make a diagnosis of any individual is a doctor who is directly involved in their care. It's irresponsible and harmful to make pop-diagnoses from your comfy armchair, be it of people one knows, or of celebrities. It's not possible to make an accurate diagnosis of someone you've never met, nor even of someone in your peer group. A full psychiatric examination would be necessary, in a therapeutic setting, alongside a person's full medical history. Psychiatrists don't study for 13 years in medical school for nothing. There is a little more skill involved than making wild speculations based on stereotypes and guesswork.
Living With A Mental Disorder
Which mental disorders can give rise to inconvenient and odd behaviour?
The short answer is "any, and all, of them". And there are many. I don't have the space or expertise to give details of all of these conditions, but here is a taster of the types of illness that could cause mental distress and behavioural problems:
Addiction, Bipolar Disorder, Depression, Eating Disorders, Generalized Anxiety Disorder, Obsessive-Compulsive Disorder, Panic Disorder, Postnatal Depression, PTSD, Schizophrenia, Seasonal Affective Disorder, Social Anxiety, Dissociative Disorders, Sleep Disorders, ADHD, Tourette’s Syndrome, Agoraphobia, Body Dysmorphic Disorder, Hoarding Disorder, Hypochondriasis, Trichotillomania.
And that is also just a broad overview!
How does any of that help me to understand?
All of the above information tells you some facts, but no specifics. It also doesn't (yet) give you the tools you need to appropriately process what is going on. You don't need any specialist medical knowledge in order to be a good ally, but the right set of general skills can be a very useful thing. It can put you in a good position to understand the experiences of those with mental health conditions (and other humans, generally). It can also help you to respond better to situations in which someone you know is behaving in a challenging way due to their condition.
If anything, it should teach you to stop and consider what is really going on in someone's life before you get annoyed with them. And ponder this: those behaviours are symptoms of an illness. They are not actions committed through choice. While a patient's behaviour may be antisocial, they do not wish to be that way. And they are as likely to be as aware of it as you, and are probably more distressed about it, as well.
Because many of these troublesome behaviours are also actions committed by the badly-behaved, out of choice, it is easy to see why those behaviours, and mental ill-health, are stigmatised. But there is a difference between the two groups of people, and conflating them is dangerous for two reasons:
- It perpetuates the existing stigma about mental illnesses and disorders;
- It excuses bad behaviour in others, by labelling it as the product of an "illness", when it is actually the product of disrespect.
Let's Bust Some Myths!
The prejudices and misconceptions we have about mental illness have led to a narrative that supports some commonly-held beliefs that turn out to be untrue.
Myth #1: Mentally ill people are dangerous
Those with mental illnesses are more likely to be the victim of violence than the general population. While "mental health issues" are brought up by the media in virtually every act of terrorism / mass killing / hate crime, the truth is always more complex, and often doesn't involve a mental health diagnosis. Those with mental illnesses are more likely to harm themselves than others, but that doesn't mean that this is universal. A risk factor is not predestination.
A Closer Look At Self-Injury
Myth #2: Mentally ill people are incapable of managing their own affairs or thinking for themselves
A mental illness doesn't make you mentally incapable, and even if it does, society has plenty of checks and balances to notice and intervene on the rare occasions that this is the case. Assuming that a mental illness means that someone doesn't know their own mind is based on outdated perceptions of all mental illness being terrifying and debilitating. There is also an element of people wanting to help, but assuming that they know best and actually interfering and infantilising. It is also related to memories of "lunatic asylums", where those afflicted would be locked up for their own good (i.e. for society's convenience).
Myth #3: Mentally ill people cannot, and should not, work
This stems from the belief that a mental illness takes over the brain and distorts a person's cognition so much that they become incompetent and dangerous. This is not true. What is true is that mental illnesses create barriers to work, and employers are often unforgiving and unaccommodating (even though the law requires them to make reasonable adjustments).
You wouldn't say it about a physical ailment...
Myth #4: Mental ill-health is the sign of a weak character
People do not choose to become mentally ill. And people do not become mentally ill through their own mistakes or poor choices. One's environment can be a contributing factor to the problems, but each individual's mental health is a cocktail made up of numerous ingredients, many of them biological rather than social. Personality disorders are different, and often conflated with mental illness. But people do not choose to have them either, and those with personality disorders can still live rich lives and integrate into society perfectly well.
Myth #5: Mentally ill people are just being difficult / faking it / looking for attention
This notion stems partly from the inability to understand another person's mental pain, and partly from the view perpetuated by the UK & US governments that anyone not in paid employment is a "scrounger". But would somebody really choose to live a lifestyle where they are vilified by society and have to exist on meagre benefits, if they can even access them? It's not an easy life, and once in poverty, the system actually makes it more difficult to escape it.
We can help to dispel this myth by making the effort to understand other people's problems, challenge our own assumptions, and lobby the government for better provision for the sick and disabled.
Myth #6: Mentally ill people can just snap out of it
There are two elements that make up this myth: The empathy gap (again - the inability / refusal to understand things from another's perspective), and the "Stiff Upper Lip" phenomenon, which may be particular to British culture. Many people think that the strength-sapping weight of mental illness can just be cast off by adopting a brighter attitude. It can't. No amount of positive thinking will deal with the ingrained biological and psychological problems that make up a mental health condition. The Stiff Upper Lip is responsible for people concealing their problems, refusing to talk about their feelings, and the high suicide rate among middle-aged men.
Myth #7: it is obvious when a person has a mental health condition
The stereotype is of a deranged lunatic, acting odd, talking to themselves, shouting at traffic, having no boundaries and exhibiting extreme behaviour. Left untreated, yes, these are possible symptoms of some severe forms of mental illness. But our support structures have improved since the days when the mentally ill were mocked and displayed like animals in a zoo. Nowadays, you cannot tell. You probably interact with mentally ill people on a daily basis without realising it. Treatments have become better, and society has become less repressive, so that our idea of "normal" has expanded and symptoms are easier to ameliorate and conceal. But this isn't all good news. Many sufferers put a huge effort into appearing "normal" in order to function in society, and then let it all out, or collapse, when they are in private. Keeping it all in is not healthy and can hinder progress, both for the sufferer's treatment, and for society's acceptance of mental illness. We already know that invisible illnesses attract less sympathy; if we don't talk about them either, the problem is reinforced.
The idea that mental health symptoms are visible also feeds the epidemic of armchair psychiatrists "diagnosing" media figures and strangers with whatever mental disorder is fashionable this week. Sometimes people are just badly-behaved - with or without a mental health diagnosis.
Myth #8: Medication solves all the problems
We are fortunate to live in a time when there are proven treatments for many health conditions - mental and physical. But you can't just pop a pill and that's it, cured. Medication can help to reduce symptoms and make life easier to live, but often it needs to be taken alongside therapy, counselling, or lifestyle changes. And even then, some medications work better than others, for different people. So it might take a bit of trial-and-error to determine which drugs are the right ones for the individual. And then the dosage needs to be adjusted. Selecting the appropriate drugs is a process, not a destination. And then there are the side-effects, which also vary from drug-to-drug, patient-to-patient. Some are tolerable, some are horrific. Some we just have to learn to live with because the benefit outweighs the cost. Many of the possible side-effects are also symptoms of mental health disorders, so please don't believe that medication is all that we need to live better.
Myth #9: When you have a mental illness, you have it for life
This is a tricky one, because some mental illnesses are lifelong conditions, which can be treated but not cured. However, some conditions can be cured, or at least minimised to the point where they have almost no impact on someone's life. Many conditions are triggered by environmental factors, such as major life changes, or periods of extreme stress. They may resolve themselves if the external factor is removed. And then there are people who do live their whole lives with a mental disorder, but get on just fine.
Myth #10: People with mental illnesses are weird and act "crazy"
Most humans are a bit weird in some way - this is a consequence of being human. Simply acting eccentrically doesn't make you mentally ill, and having a mental illness doesn't mean that you're going to act in a peculiar way. "Crazy" is one of those words that is now problematic in almost every way it's used (hey, language evolves), so that it's become both stigmatising and meaningless. Maybe we'll need to find a new word, or perhaps we could just say what we actually mean.
Time For Some Truths
Mental health charities have gathered an impressive body of research on mental health conditions. The stats below are obtained from their websites. In the UK, at the time of writing, it seems that charities are doing the most work in terms of advice and treatments, due to the NHS provision for treatment and care being under-funded to the point of it being useless. And the first truth is related to charities:
Truth #1: The NHS has low funding, but charities are struggling, too.
Using data that I extracted from the Charity Commission's website, I discovered that all UK mental health charities (of any type, be it research, care, treatment, education, everything) receive less than £0.5 billion per year combined. It's a small pie with many slices. For comparison, the NHS receives £0.6 billion for mental health services per year. This is an outrageously small amount for an incredibly huge social problem. The public and voluntary sectors are creaking at the seams, and private health care is only accessible to a few.
Truth #2: Mental health problems affect all people, of all ages, in all social classes, BUT some groups are more at risk than others
- The elderly are the group least likely to have a mental illness, and the middle-aged, until recently, were the most likely. The latest NHS Adult Psychiatry Morbidity Survey has revealed that women aged 16 - 24 are now the group most likely to experience mental ill-health .
- The most recent Samaritans Suicide Statistics Report shows a high rate of suicide in the over-85s, but this is also tempered with caution: they are a smaller subset of the population and this group is therefore more susceptible to fluctuations in the data .
- Women across all age groups are more likely than men to have a mental health condition, and are more likely to experience serious symptoms than men .
- Men are 3 times more likely than women to die by suicide, but women are more likely to self-harm, and more likely to make attempts to take their own lives [2, 3].
- Most deaths by suicide are of those with a mental illness (diagnosed or undiagnosed), but many (about 10%) are not . Most people with mental health problems do not die by suicide, although they are at higher risk .
- Poor people are no more likely to suffer mental illness, but they are more likely to face barriers to accessing treatment .
- Black people with mental health disorders were least likely to access treatment for their condition .
- Those with poor physical health are more likely to also experience poor mental health, than the general population .
- Those with a higher IQ are less likely to experience a common mental health disorder . I found this one particularly surprising, but there is a neat, linear relationship between rising IQ and reduced likelihood of occurrence.
- Those who live alone are more likely to be affected, especially if they are male .
- Those who are out of work are more likely to have a mental health condition, although it isn't clear whether the unemployment worsens their mental health, or if poor mental health leads to unemployment. It's likely to be a mixture of both, but no data is available to tell us how the mixture is concocted .
- There is a growing mental health problem among young people .
- Adult Psychiatric Morbidity Survey: Survey of Mental Health and Wellbeing, England, 2014 [NS]
- Suicide Statistics Report 2017, Samaritans.
- Adult Psychiatric Morbidity Survey (2014), Chapter 12: Suicidal thoughts, suicide attempts, and self-harm
- Suicide - Causes - NHS Choices
- Facts About Mental Illness and Suicide - Mental Health Reporting - UW School of Social Work
Truth #3: Mental Illness Costs The Economy As Well As The Health Service
- These are stats for the UK, which has a population approximately one-fifth of that of the US. However, there are differences in social and cultural issues, so the numbers may not be scalable.
- Each year, mental health problems related to pregnancy and the post-natal period cost the UK economy about £8.1 billion .
- Every year, British firms lose around £26 billion due to mental ill-health , which includes a loss of 11.7 million working days .
- A study from 2010 showed that the total cost to the economy (only in England) was £105.2 billion . That figure includes the above cost to the workforce, costs related to reduced quality of life, and care and treatment costs. And yet the UK government invests just 0.6% of that value in mental health research & treatment.
- Worldwide, the global economy is depleted by $1 trillion due to mental health problems .
- Cost-effectiveness of interventions for perinatal anxiety and/or depression: a systematic review
- Health & Safety Executive: Work-related stress and how to tackle it
- Centre for Mental Health | Economic and social costs of mental health problems
- Forbes | The $1 Trillion Link Between Mental Health and Economic Productivity
Truth #4: We are getting better at diagnosing people's mental disorders, but we're not treating them effectively
As the years go by, we gain a better understanding of mental illness, and we have put more effort and diligence into identifying it. The definitions of mental illness are regularly updated based on the latest evidence. There are, arguably, cases of over-diagnosis, but other studies show that rates of mental illness are increasing over time.
Where we fall down is in delivering the appropriate care. Mental health problems can have complex causes, be resistant to treatment, and have intensive and expensive treatment regimes. As was mentioned above, the funding just isn't available, and patients are waiting excessively long times to see a specialist or to be admitted to hospital for care.
Mental health support in primary care right now
Truth #5: The benefits system is unfair and horrendous to navigate, and it can be difficult to hold down a job with a mental health problem
Within the UK, things are extremely tough for those with a disability of any form. The benefits system appears to be rigged for applicants to fail, and employers are frequently unsympathetic. People drift from short-term employment, to meagre benefits, to another job they cannot cope at, due to the present governments ideology of "strivers vs. skivers".
If you have a disability that limits your capacity for work, you apply for Employment & Support Allowance (ESA). A condition of receiving this benefit is that you look for work, even if you're not capable of it. Claims can take months to be assessed, and even with evidence from your doctor, you need to attend an assessment with a government administrator who has no medical training and scores you against arbitrary criteria that have seemingly nothing to do with your ability to work. If you miss an assessment or jobcentre appointment, or commit one of many possible transgressions (even if it is an inherent part of your condition), you get your benefits docked. The system reinforces the cycle of poverty, and lets the sick and disabled down terribly. It's a disgrace, and I'm confident that we will look back upon these times with horror and disgust at how we treated our most vulnerable citizens.
You can read the questions used for assessment in this link (benefitsandwork.co.uk - Take The ESA Test). Oh, one more thing: jobcentre staff have targets for the number of claimants they can refuse benefits to. Some of the reasons for being declined are farcical, and are easily concocted by the vague nature of the assessment criteria, like this gentleman who was told his mobility needs were not severe enough because he could travel unaided as he was able to haul his body along with his arms when out of his wheelchair. One of our MPs belittled the plight of those with mental illnesses, describing them as "taking pills at home, who suffer from anxiety" and not "really disabled people". This is at odds with the government's pledge to give mental health issues parity with physical problems. One-third of all those refused ESA were able to appeal the decision, with access to the appropriate advice. In more than half of those cases, the hearing found in the claimant's favour.
For those in employment, they are protected by the Equality Act 2010. A mental health condition is classed as a "protected characteristic" (a legal term used in the Act) if it causes a disability. This is usually applicable to mental health conditions. The problem is that the employee has to initiate action against their employer themselves, fund their own legal costs, risk loss of income and reputational damage. Companies employ HR staff who advise them on how to stay just on the right side of the law, and can afford to employ specialist lawyers to skilfully manoeuvre their way through the tribunal system. The odds are stacked against a claimant.
A Self-perpetuating cycle
In Summary: Making A Difference
If you want to understand the problems faced by those with mental health disorders, this is what you need to do:
Know that it is not a simple problem to live with, treat, or deal with as a carer.
Listen to what the affected individual has to say about their condition. Don't force them to talk if they don't want to, but believe them when they describe their experience to you.
Be patient. Some of the symptoms and coping strategies of mental illnesses can be anti-social and inconvenient, but it is not a deliberate act on the individual's part.
Recognise that nobody would choose to live that sort of existence. There is no point blaming them or making them feel guilty. You can offer support and encouragement, but know that they could fail even though they are trying really bloody hard not to.
Be aware that the entire system is stacked against them. As well as having a mental disorder, they also need to cope with:
- other people's, and society's, feelings about them;
- employers that see them as a burden;
- a benefits system designed to prevent them accessing what they're entitled to;
- an under-funded and over-stretched health service
Correct other people when they make false assumptions or discriminate against the mentally ill. Allies can look out for us by educating their peers.
Your experiences of Mental Illness Stigma and Discrimination
It's Time To Change
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2017 Katy Preen
Henry Cox-Paton on April 26, 2017:
A very insightful article.