Betrayal of the mind: living with bipolar disorder
For many people, care is out of reach
Ashley* was 18 and in his final year of high school when his mind was first attacked by a depressive episode of bipolar mood disorder. Thanks to medical and social support, Ashley came through it and now has a degree and a job. But for many people living with mental illness in South Africa, that vital care is out of reach, writes Andrea Teagle.
“You get put into a different world that you’ve never known existed. Your mood drops into a massive chasm… You completely lose sight of reality, what’s going on around you, and yourself.”
It started with anxiety in the build-up to Ashley’s matric finals. First, his hands and feet began to sweat. The sweating became uncontrollable. Then his thoughts sped up. He couldn’t sleep. He couldn’t focus.
“I had no idea what was happening [to me],” Ashley recalls. “My thoughts were irrational, and they were coming at me so fast”. He clicks his fingers twice in rapid succession. “You could watch those thoughts and think, what’s going on? This is not normal.”
Overcome with a deep sense of worthlessness, Ashley’s thoughts rapidly became suicidal.
He went to his parents who immediately sought medical help. A GP diagnosed him with depression and prescribed anti-depressants. At that point, Ashley had yet to experience full-blown mania associated with Bipolar Mood Disorder Type 1, although with hindsight, some of the symptoms of that first episode – particularly the racing thoughts – seemed to hint at what was to come.
People with type 1 disorder have experienced at least one depressive and one manic episode. (A person with bipolar 2 experiences at least one major depressive episode, and less extreme mania, or hypomania.) Mania is a period of a week or longer of extremely high energy, racing thoughts, impulsive, distractible behaviour and, in severe cases, losing touch with reality.
The current understanding of bipolar is that a person may be more or less vulnerable to the disease, but that its development is activated by environmental stresses (which might be social, psychological or biological). As was the case with Ashley, bipolar disorder usually develops in the late teens or early twenties. Evidence suggests that the illness is linked to biochemical imbalances; however, doctors rely on symptoms to make diagnoses.
“People with mental illness often go undiagnosed,” says Dessy Tzoneva, the spokesperson for the South African Depression and Anxiety Group. (SADAG). “Even when seeking help, it can take numerous visits before an accurate diagnosis is reached. For example, 69% of patients with bipolar disorder report being misdiagnosed initially.”
Armed with antidepressants, Ashley returned home, and his symptoms began to fade. He somehow managed to get through his exams and earn a university pass. “I was a lot better after my exams… I thought I was fine.” He smiles ruefully. “So then, I went travelling.” Just a few months after his first depressive episode, Ashley and some friends went overseas.
For about a month, everything went smoothly. Then, the symptoms returned.
“They weren’t quite the same, but they were similar.” For a few nights, he didn’t sleep. Once again, his thoughts began to speed up. Thinking that he was on the brink of falling into depression, Ashley upped his dosages of antidepressants.
“It was the worst thing I could have done, as it pushed my mood in a direction it was already heading.” Ashley was entering his first manic episode. Although mania, conceived as a ‘high’, may sound appealing, Ashley is clear that that is far from the case. The early, elevated mood quickly devolved into a manic breakdown.
“Everything happens slowly… You don’t take in your surroundings the same way. You begin to really live in your own mind. Whatever you’re thinking starts to have absolutely no bearing on reality.”
It is common for people experiencing mania to experience inflated self-esteem, make grandiose plans, spend huge amounts of money, or engage in other kinds of risky, impulsive behaviour that could be a red flag for loved ones. But for Ashley his drastically altered internal state did not manifest outwardly in obvious ways. Stuck in a foreign place with people he didn’t know, Ashley tried very hard to disguise what was happening.
Unfortunately, for a time, he succeeded.
Running on no sleep (which is known to trigger mania in some people), and with antidepressants probably exasperating his manic state, Ashley started hallucinating and experiencing severe paranoia. He believed that people were after him; police were tracking him; helicopters were chasing him overhead.
He has forgotten much of what happened during that time.
A small 2013 study published in the journal Psychiatry Research by researchers from McMaster University in Canada found that participants with bipolar displayed selective memory loss when recounting events that took place during manic episodes (this was not the case when recalling events that took place during other mood states).
Ashley was hospitalised in the middle of his breakdown, and stayed in hospital for three weeks. He does not remember the first two, which is probably a good thing, he says.
In the weeks and months that followed his discharge, Ashley’s hopes and dreams – indeed, the very assumption of a normal life progression – crumbled. He despaired of ever being able to cope with the stresses of a regular job or starting a family.
“The years following my breakdown I was stunned and overwhelmed. For a very long time I was unable to fully comprehend what happened,” he says. “I think my psyche wouldn’t allow it.”
Ashley emphasises how important the support he received has been in enabling him to be where he is today. “If I hadn’t had the essential support structures, I don’t know what I would have done. I’d be dead,” he says with conviction.
For many people living with bipolar and other mental illnesses in South Africa, however, that vital medical and social support is out of reach.
Mental health is the third highest contributor to the burden of disease in South Africa, after HIV/AIDS and infectious diseases. The much-cited South African Stress and Health (SASH) study of 2009 indicated that 30% of South Africans will experience a mental health disorder – which might include substance abuse or traumatic stress – over the course of their lives. (The SASH study, the only nationally representative survey to date, uses data from 2003-2004. More data on the state of mental health in South Africa is sorely needed.)
The burden of mental illness is intimately integrated with social and economic challenges. In this sense, the scope of the problem in South Africa is symptomatic of a deeply unequal society. Links between poverty and mental illness are well documented. Poverty exposes individuals to stresses like crime, violence and financial stress, which increase the risk of mental illness. Conversely, mental disorders, particularly when untreated, increase individuals’ likelihood of falling into or remaining in destitution.
Mental illness costs untold amounts in quality of life, and the country billions of rands in lost productivity. About 75% of people with psychiatric illnesses in South Africa do not receive the help they need.
The rights of South Africans with mental illness are protected in the Constitution, and the Mental Health Care Act of 2002. The introduction of the Mental Health Policy Framework (MHPF) for SA and the Strategic Plan 2013 - 2020 was an important step in building capacity in mental health care. However, a continued lack of resources, a limited number of psycho-social providers, too few psychiatric beds in hospitals, and widespread stigma and discrimination remain major obstacles in ensuring that people with mental health illnesses receive the care they need.
According to SADAG, South Africa only allocates around 4% of its health expenditure (which in turn comprises about 14% of total government spending) to mental health, a figure the advocacy group considers sorely inadequate.
Crucial too are efforts on the part of groups like SADAG to increase awareness of mental health disorders within communities, so that people do not suffer in silence.
“[The] stigma and discrimination associated with mental illness… may discourage people from seeking help,” Tzoneva says.
Ashley has come a long way from the scared, broken boy who emerged from hospital after his first manic episode. Years later, with a graduate degree and a stable job, Ashley presents as a quietly confident young man.
For him, bipolar disorder is a betrayal of the mind, external to his true self. “Bipolar does not define me, although it took me a long time to realise that.”
His battle is ongoing, however. While his medication, and careful adherence to a healthy lifestyle, keep the devastating highs and lows at bay, Ashley continues to fight an immense internal battle that the people around him cannot see.
“The stresses of everyday life make it very hard to be in a body that can relapse,” he says. He also feels that his medication, while critical to maintaining his health, dulls his personality and existence.
At the time of writing, Ashley had been diagnosed with post-traumatic stress from the episodes he experienced ten years ago. Even with the right treatment, the road to recovery is often long and lonely in a society where mental illness is little understood.
“Ultimately,” Ashley says, “You have to deal with it all on your own. And that’s the hardest part.”
*Not his real name
“[The] stigma ... "associated with" mental illness.
You learned that association. You can un-learn it.
Better to un-learn it, than to continue to teach it to others. Let it not be a part of the heritage you pass on.
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