In human genetics, the most common ancestor of all living humans is known as Mitochondrial Eve, who I shall call Eve. Think of her as the biblical Eve if you wish. Eve lived between 100,000 and 200,000 years ago in southern Africa (or Eden if you like). The point is; DNA has passed down through generations for all those years to us. Even by the time Eve was born our DNA was already very old. Scientists in the United Kingdom have found that genetic events that occurred 550 million years ago led to the developing nervous system. Some of the genes that control cognitive function have been passed down to us almost unaltered. Similarly, mutations of these genes, that change cognitive function have also been passed down, including mutations that are implicated in the development of mental health disorders.
It is conceivable that Eve herself may have had a mental health disorder. She carried genes that, when expressed, would have given rise to the biological predisposition for a mental health disorder. Since Eve’s time more genetic variation has occurred. Some giving rise distinct ethnic groups, some to physical traits like skin colour and eye colour, and some to congenital diseases. The potential for developing a mental health disorder exists in all of us, encoded in our genes. It always has been. Stone age man knew about mental disorders, as did ancient cultures in China, Mesopotamia, India, Egypt, and, Greece.
Mental health disorders are extremely old. They are widespread. They are also very, very common. As of 2019, 50% of Australians will have experienced a mental health disorder at some point in the lives. There will be more that won’t admit to it, and still more who never knew that their problems were due to a mental health disorder. When I studied Psychology in the 1980’s mental health disorders where taught under the banner of abnormal psychology. But they are clearly not abnormal. If anything, living your life without experiencing mental health issues is abnormal.
Despite the fact that they are share similar heritability characteristics and biological mechanism, we differentiate mental disorders from and congenital physical illness. We have associated far more negative values and stereotypes to mental disorders than we have to other congenital disease. This delineation has been reinforced and maintained by structural stigmas endemic in the attitudes of some health professionals, health systems, and government departments. The Australian Productivity Commission in 2019, has released a report on national strategies for mental health. It offers hope of much needed improvement in the lot of mental disorder affected people and it is to be commended. But it illustrates the schism that exists between the manage of mental health and the management of physical health. I have to live with this everyday. I have one doctor for my physical health and another for my mental health.
All of this is a legacy of times past when we lacked knowledge and understanding of the biology of mental illness and its pathophysiology. This situation has inadvertently contributed to the emergence of needless and destructive stigma and discrimination toward people with mental illness because mental health is so often seen as different from physical health. Stigmatising and discriminating against people with a mental illness is very common and very dangerous. It can increase the already elevated risk of suicide. It can prevent people from seeking help. It can destroy relationships and fractures family ties. It fosters ignorance and denial. It causes pain and misery not only to the mental illness affected person, but also to friends, family, carers, and colleagues.
The time to change is upon us. We are entering an exciting time of new discoveries in genetics, neuroscience, biochemistry and other disciplines, that are increasingly showing mental illness to have a predominantly biological nature. This offers us the opportunity to re-frame the concept of mental illness as congenital physical illness. When we do this we will eradicate much of this stigma and discrimination associated with mental illness and alleviate the harm it causes. We will reduce suffering, and we will save lives.
I believe that the argument for removing the delineation of mental and congenital physical disorders is undeniable. It is evident that the difference between people with mental illness and those without, is not founded on differences in character, personality, culture, belief systems, or other social constructs. Rather the root cause of most mental disorders is predominantly biological, genetic, neurological, biochemical. When a particular combination of genes are expressed, certain mental illnesses, or predisposition for mental illness, may result. We treat these as mental illnesses when ongoing signs and symptoms cause frequent stress or impair our ability to function. We categorise mental disorders to help in diagnosis and treatment but the causes and symptoms of mental illnesses are not distinct. The boundaries between bipolar and schizophrenia and other conditions are blurred.
Different combinations of expressed genes, when coupled with influential environmental triggers, lead to different mental health conditions. These conditions share common genes that cause common anomalies in the way biological and biochemical systems work. The National Institute of Health in the US, cites research that found five major mental disorders share certain genetic anomalies. Bipolar disorder shares genetic anomalies with depression and schizophrenia. Autism shares genetic anomalies with schizophrenia. Bipolar, schizophrenia, autism, and, depression, all share changes to the way calcium uptake channels work.
I read on one mental health website, that bipolar disorder is 80% genetic. I am not entirely sure how the figure of 80% was determined, but other sources I have read corroborate the finding . A 2017 Danish study estimated the heritability of schizophrenia to be 79%. Research into “depression genes”, as reported by Medical News Today, has found that depression is heritable, though many, many gene variants can be involved. I take this as a clear indication that mental illness has a primarily biological basis.
The QIMR Berghofer Institute, is currently researching the genes responsible for bipolar disorder. They hope to better understand the condition and gain knowledge that will lead to development of more effective treatments. There are many other lines of research investigating biological aspects of mental illness like the role of epigentics (which looks at how genes are turned on or off), neuroplasticity (the ability of the brain to rewire itself), neuroscience (the study of the nervous system), mitochondria research (part of which concerns how malfunctioning of mitochrondrial systems causes disease).
Some genetic anomalies give rise to dysfunction at a molecular level compromising the working of the central nervous system, the peripheral nervous system, the enteric nervous system, and, the connective networks between brain and gut. Sometimes this causes unbalanced production of hormones, which can cause neurotransmitter imbalance contributing to depression, anxiety, mania, insomnia and other symptoms. Dopamine, GABA, glutamate, norepinephrine, and serotonin are probably the most widely known neurotransmitters and are the target of many of the most widely used pharmacological treatments, such as selective serotonin reuptake inhibitors (SSRIs), which are antidepressants that moderate the function of serotonin. Symptoms caused by neurotransmitter problems are not limited to mental illness. They are also risk factors for physical diseases like irritable bowel, hormone dysfunction, eating disorders, fibromyalgia, chronic pain, migraine and headaches. They also play an important role in autoimmune diseases.
This doesn’t mean we should throw away the DSM V. Rather it suggests that we would be well served to change how we talk about mental illness and put greater emphasis on the underlying biology. I don’t doubt that mental illness is biological. I have bipolar II disorder, I was diagnosed partly by a blood test for lithium levels. My treatment is almost entirely pharmacological, with the balance being occasional chats with my psychiatrist to fine tune dosages of my medication. Occasionally, I do reach out for other help when my psychological symptoms are particularly difficult to tolerate, but by and large I manage my conditions with medication. My condition responds well to exercise which stimulates the production of hormones and releases endorphins, serotonin. Many of my bipolar II related symptoms are physical. I suffer fatigue, headaches, fevers, tremors, racing heartbeat, difficulty breathing, low energy, high energy. All observable, measurable physiological events. It has taken years for me to overcome the self-stigmatisation that made me feel a lesser person because of my mental illness. Now I see myself in terms of definable biological rhythms and patterns. I have a better understanding of what is going on and I can manage my physical health, my mental health and my social interactions so much more effectively.
I am lucky enough to have a couple of mental health disorders and a bunch of autoimmune diseases. I have a lot going on. To me, they are all part of one complex system, me. My treatment for my autoimmune diseases is a similar to my treatment for bipolar II, a mix of pharmacological treatments with occasional supplemental therapies like physiotherapy. Interestingly, many of the symptoms of bipolar are also symptoms of autoimmune conditions. When I have a mood swing it could be caused by bipolar II disorder, lupus, ankylosing spondylitis, or any mix of them. I treat my mental and physical illnesses in the virtually the same way. In many cases, the pharmacology is working on the same target cells and neurotransmitters. As far as I am concerned, the biggest difference between my autoimmune conditions and my bipolar disorder, is that with bipolar I get hypomania, which, problematic as it is, at least cheers me up for a while.
It is no coincidence that, since I worked out the right medication to treat my bipolar disorder, I have experienced a dramatic reduction in symptoms of my autoimmune diseases. The mirtazapine and quetiapine, which I take as an antidepressant, also have an anti inflammatory action. So my medication is simultaneously moderating symptoms of my bipolar disorder, the main target, and my autoimmune diseases, a happy coincidence.
I don’t wish to disparage the efficacy of psychological treatments like ACT and CBT. For many people, these treatments produce very positive results. In my case, I have experienced mixed results. I get more benefit when my medication is on point.
Autoimmune disease occupies the middle ground between congenital physical illness and mental illness. They are diseases that primarily known for effecting physiology such as the muscoskeletal system, or the nervous system. They also have symptoms like mood swings, sleep disorders, chronic fatigue, chronic pain and more. They may involve psychological symptoms like depression. One thing that sets autoimmune disease apart from most types of congenital physical disease, is that symptoms can be very difficult to detect and to observe. For example, you need to look at my blood tests to see that I have lupus and ankylosing spondylitis because there are no outward signs. In a general sense, autoimmune diseases are seen as physical illnesses and attract less stigma than mental disorders. Arthritis diseases like rheumatoid arthritis and ankylosing spondylitis, is a case in point. You can’t always see it but you are happy to accept that it is real and worthy of sympathy and support.
But some autoimmune diseases are characterised by symptoms like depression, chronic fatigue, chronic pain and mood swings. These symptoms are tolerated far less. Sufferers of autoimmune diseases are often subject to stigma and discrimination in much the same way as people with mental illness. The main problem lies in perceptions that symptoms like chronic fatigue and chronic pain don’t really exist and are really fecklessness and laziness. When we tackle the stigma associated with mental illness we will also tackle stigma and discrimination associated with immune disease especially where common symptoms occur.
I have first hand experience of the stigma associated autoimmune disease. There is a world of difference in the way I am treated by other people when I am having a flare of autoimmune disease compared to when I present with a physical illness with obvious visible symptoms. If I had a broken leg and struggled to get around on crutches with my leg in a cast, people would be sympathetic and would be comfortable showing it. They would happily sign my cast and help me to my car. When my brother developed bowl cancel, family and friends rallied around in support. I flew half way round the world to be with him. It’s what we do when one of our own is in trouble, right? Very different attitudes come into play when it comes to conditions like autoimmune diseases. I am not equating cancer with autoimmune diseases, I just want to draw attention to the fact that baseless value judgements and stigma influence how we see and interact with somebody suffering from an autoimmune disease.
If I am suffering chronic pain and fatigue during an autoimmune flare people might initially show sympathy, but this quickly dissipates if my symptoms drag on or re-occur after only a short period of respite. Symptoms like chronic pain and chronic fatigue have negative values associated with them. Chronic fatigue can be confused with malingering. Chronic pain can be misinterpreted as attention seeking. I can remember when chronic fatigue first became a thing, and to say people were skeptical is an understatement. I was incredulous myself. Many people still don’t believe that chronic fatigue exists. Karma ensured that I changed my perspective. Even so, I have learned not to bother anybody with my autoimmune problems because those stigmas are still well entrenched.
I have experienced stigma and discrimination from family, fiends, colleagues and health professionals. I have had doctors dismiss my conditions even as they hold the evidence in their hands. It’s as though they look at me and say “you don’t look unwell so there can’t be anything wrong”. It doesn’t fill you with confidence. I don’t disclose my illness unless it is absolutely necessary, like when I collapse and need help to get to my feet. I stopped consulting my doctor about my autoimmune problems. As a result I suffered a deep vein thrombosis and ended up in hospital with pulmonary embolisms and came close to shuffling off this mortal coil. The point is; stigma and discrimination abound when it comes to chronic illness and for those who suffer them life is too often about social distancing, hiding symptoms, and, fending for yourself. This is my experience. Almost everything I know about my autoimmune diseases is down to my own research. I have become an informed consumer, which brings it’s own problems. For the most part I am left to my own devices to manage diseases that reduce life span by decades at best and, at worst, can be deadly.
When it comes to mental illness, affected people have to navigate an even more pernicious mire of stigmatisation and discrimination and on an almost daily basis. Diagnosis categorises the patient with mental health conditions under labels like depression, anxiety disorders, bipolar disorder, schizophrenia, and so on. These labels are stigma which confer qualities on a person that can act as a mark of shame, disgrace, or inadequacy in the eyes of many people. I have frequently been advised by friends and colleagues not to disclose my mental disorders for fear of being stigmatised. I don’t listen to them, obviously.
People are stigmatised when unfounded negative perceptions and values are attributed to them, mostly by other people but also sometimes by themselves. The effected person may be stigmatised by people considering them as being unacceptably different, unworthy or threatening. Stigma then becomes justification for stigmatising behaviour, such as by attributing to all people with a particular label, the notion that they are “dangerous”. Stigmatising behaviour has its roots in ignorance, where lack of knowledge leads to uninformed decision; prejudice, where attitudes are based on fallacies; and, discrimination, where behaviour towards a stigmatised person is influenced by prejudice.
Stigma and discrimination is always painful and destructive. For people with a mental health disorder, stigma and discrimination may exacerbate some of the most debilitating symptoms and circumstances. Ill-informed notions that people with mental ill-health are dangerous, for example, can result in being shunned and isolated. Isolation can exacerbate feelings of worthlessness and loneliness and these, in turn, can lead to suicidal thoughts or even suicide. Accusations of being weak and not having a real illness are just as destructive. A stigmatised person might be shamed into forgoing treatment and that may have disastrous consequences. The misconception that a person can control his or her condition can have a very harmful effect on relationships when family and friends see mental illness as a way of manipulating them. Supportive relationships can become dysfunctional even to the point of becoming confrontational and antagonistic.
I have lost jobs and missed out on promotions because of discrimination. The reasoning seems to be something like “your moods will effect team harmony”, or ”you might commit suicide and bum everyone out”. When I apply for a job I keep my mental health situation to myself and I don’t share my mental health status to the people I work with either, all because discrimination is so common in the workplace and can have such serious consequences. Attitudes towards mental ill-health have improved a great deal over the last decade or so. Still, even in personal relationships, I am careful in how I talk about my mental ill-health (except when I blog). Too many times I have been confronted with denial and even downright anger, especially within my own family. I don’t talk to some of my family anymore and they don’t talk to me, because of their attitude to my illness.
I have also encountered discrimination in the medical profession. My health insurance was useless when I needed help the most. A health insurance policy that would meet my needs is well beyond my means, even if could find a willing insurer. I have given up on private health insurance. Thankfully, Australia has an awesome health service. One thing that annoys me is the patronising attitude of some of the doctors and psychiatrists I have consulted. I have sometimes had the feeling that they are on a crusade to save the health system from the plundering of people like me. A example of what is called structural discrimination. It has taken me years to find health professionals that I trust. If you don’t trust your health professional, keep looking and never forget, you are the customer!
So what can be done about stigma and discrimination of people with mental illness? The Global Anti-Stigma Alliance, which includes a international alliance of organisations like beyondblue, are studying stigma and discrimination in mental health and have formulated a set of key approaches for stigma reduction. They have also developed a program of social marketing campaigns aimed at tackling stigma and discrimination. This is great news and I intend to do what I can to help. But, in my opinion as an empowered consumer, the strategy has a gap. It doesn’t tackle the re-framing of perceptions about the causes of mental illness to emphasise the biological factors.
One way I will be helping is by raising awareness of the biological basis of mental illness and by influencing people to accept that mental illness is physical illness. I will also blog about my mental health in the spirit of contributing to lived experience leadership, a key approach of the Global Anti-Stigma Alliance. Time to change.
Eve's Gift 