Waiting on the Cliff Edge: The crisis of quarantine for the mentally ill.

Retropxssy‘s #MadCovidDiaries

TW: Suicide, Anorexia, COVID deaths

I feel as though I have been left to die.

I am one of the 1 in 4 people in the world affected by a  mental health problem.

‘Normally’, despite diagnoses of complex trauma, anorexia, anxiety and depression, I’m pretty high functioning. A lot of the time, a lot of people might not realise I’m ill. Normally, I go to work, I go to university. I make music, I perform on stage. I go home. I eat my dinner.

It can be hard to communicate when I feel bad. I find the analogy of the backpack is useful. My illness is like wearing a backpack. Wearing a backpack might not seem abnormal. It might not seem like a problem. Sometimes my backpack is light. Sometimes the load is less. But the catch is I can’t take the backpack off. And sometimes it gets very very heavy. But to others, it just looks like a bag. They can’t feel the weight of it; it’s easy to ignore.

The complexity of my conditions means that I have built up a complex web of coping strategies to help:  Over the past decade, I’ve been helped by a network of friends, family and medical staff. I’ve been helped by being outside, being active, being creative.

On my seventeenth birthday, I was admitted as an inpatient for severe Anorexia. For three months, locked on the ward, it was as if I lived in a parallel, medical universe. Although traumatic, I felt lucky to get any treatment. When I was admitted as an inpatient in 2013, I was close to death.  Anorexia is the deadliest eating disorder and it continues to plague my life. CAMHS gave me access to sympathetic, medical help, and the NHS saved my life. Six years on, accessing services as an adult is very, very difficult. Treatment is patchy, the gaps between treatments longer than the short bursts of medical intervention. 

I am as ill now as I ever was. And now, a new crisis. Coronavirus. And with it, another crisis –  the lockdown.

‘Lockdown’. ‘Quarantine’. It is my own personal nightmare: limited movement, severed support networks. I normally often spend around 10 to 12 hours a day out of the house; being outside is when I am at my most calm.

Now, I no longer recall what it is to feel calm.  And although in quarantine, I know I am not alone. A study from Ulster University showed an increase in depression and anxiety levels the day of Boris Johnson’s lockdown address on 23rd March. A few days before, 19 year-old  Emily Owen attempted to take her own life; she died on the 25th. Diagnosed with high functioning autism, according to her family, she had been unable to cope ‘with her world closing in’, plans being cancelled and being stuck inside. Her family also said that ‘She had been ‘deeply affected’ by the global pandemic and had spoken of her wish to help people with mental illnesses navigate their own way through the isolation measures.’

The wider implications of the mass-quarantine could exacerbate the situation further with the IFS reporting on a recent debate ‘whether the adverse health effects of a recession may be greater than the increased morbidity and mortality within the pandemic itself’. The IFS cites research published in March by the Centre for Economic Policy Research that estimates that a 1% fall in employment could lead to around a 2% increase in the prevalence of chronic illness.

Living in my nightmare, I try to tick the boxes of the ‘good mentally ill one’, a scheme I’ve worked out is necessary in order to avoid being dismissed as ‘lazy’ or as bringing this on myself.

I’ve called my GP and expressed my feeling of abandonment by the system, thoughts when at their strongest push me to contemplate suicide. I tell her I cannot live like this anymore, I want to kill myself. I am told: ‘It is hard for everyone at the moment’.

I have had access, by complete chance and not through any formal channels of referral, to the Tavistock and Portman clinic. The talking therapy I have been receiving there and by phone is a fragile life raft. I still feel out of control, filled with subdued panic that overwhelms me usually in the afternoons. Sometimes my manic walks mean I am out of the house when I have a seizure, and fall to the ground. Non-epileptic, possibly triggered by extreme emotion, the world suddenly far away. Concerned people try to help me, whilst keeping their physical distance.

I try to think about what got me through the “imprisonment” on the anorexia unit, a hundred miles from home, and re-read the diary I kept then.  What got me through was a desire to be back in the world. To laugh with friends and go to the cinema and go on walks. To go back to education. To be outside, to feel engaged, alive.

It is a strange world and not its not one that is possible to ‘get back to’ now. The little good things I wrote down in my diary to motivate me are not available.

At my most cynical, I wonder if we, the mentally unwell, are seen as ‘better equipped’ for crisis. Already often isolated, cut off, we are apparently used to distress and depression. We are used to long, indefinite periods of waiting; for diagnoses, for help. Is it perhaps easier to label us already somehow self sufficient, to disappear us into the convenient, silent void already so entrenched in society? A void that is screamed into so often by those who try to advocate for mental health and wellness.

Every day of the last month I’ve been looking, seeking some sense of expression of our situation in the media. (Us, a diverse group, so often silenced by our conditions and disbelieved or considered difficult when we speak out.) I find reports that mental health in the population is getting worse, I see statistics which link increasing unemployment to suicide rates, projections of 20,000 deaths from suicide if the unemployment rate hit what it is projected to. I click on the  government guidance for the fifteenth time and again, I find no tangible, practical help. Advice to ‘open a window’ to feel ‘closer to nature’ will not abate the compulsion to exercise that accompanies my eating disorder, or prevent the anguish of being unable to see, let alone touch my boyfriend, who is a vulnerable person sheltering on the other side of London. Facetime just doesn’t cut it.

Eating disorders are complex, and require specialist training to tackle, so when speaking to helplines, the main source of help I should use, according to the government, it is difficult to make myself understood. When threats are made to ban exercise, I again fear for my life.  The daily walk has been the only thing that has been holding it together. If I walk 5 miles, my illness allows me to eat. When the threat to ban exercise passes, but days pass with no end in sight for the lockdown, the fear remains. I fear for others; telling people in a crisis to ‘wait’ is like telling someone to wait who is hanging off a cliff by their fingernails. Even with changes to legislation to allow more exercise than once a day, there remains a lack of support.

In my darkest moments, I fear that mental health problems are only taken ‘seriously’ when they manifest physically. This normally means physical harm to the person suffering, sometimes irreversible harm. In a global crisis of this scale, what would the scale of the harm have to be to get taken seriously? How many lives lost?

At last I find a human voice in the void, an experience piece from Andrew Solomon, which describes the devastation of living with depression during lockdown, and he makes a valuable point on quarantine:

‘Quarantine is the oldest medical technology out there: isolation of the sick dates to the ancient world. While it protects those who are not ill, it is toxic for the patients, who show elevated rates of depression, anxiety and post-traumatic stress disorder.’

Sheltering inside when you have no symptoms, however, is essentially a new phenomenon: it happened in Toronto during the Sars outbreak of 2003, and many authorities felt its costs far exceeded its benefits. Richard Schabas, formerly Ontario’s chief medical officer of health, wrote: “In the unlikely event of another Sars outbreak in Canada, public health officials should quarantine no one.” His intent was not to dismiss the physical dangers, which were real then as they are now, but to illuminate the psychiatric ones.’

In 2001, WHO released the report, ‘New Understanding, New Hope’ stating that,

“A lack of urgency, misinformation, and competing demands are blinding policy-makers from taking stock of a situation where mental disorders figure among the leading causes of disease and disability in the world.”

“Mental illness is not a personal failure. In fact, if there is failure, it is to be found in the way we have responded to people with mental and brain disorders,” said Dr Gro Harlem Brundtland, Director-General of WHO, “I hope this report will dispel long-held doubts and dogma and mark the beginning of a new public health era in the field of mental health,” she added.

Across Europe, young people are especially vulnerable to the threat of suicide, as intentional self-harm was the most frequent cause of death among young people (15-29 years) in 2014. In the UK, in 2018, the rate of deaths by suicide increased by 23.7% for the under 25s. In 2019, it remained the case, that people with mental disorders have an increased risk of premature mortality.  Last year,  Avon, where I was living at the time of my admission, reported that beds had been cut by 30% since 2010, with an 8% cut in budgets. In the same report, Unison stated that ‘mental health services were broken and heading for crisis’.

‘Talking helps’, says the government advice.

Well, let’s talk. Let’s have a focused conversation about how mental health services have been decimated and how the mentally ill cannot be ignored in this crisis. Let’s talk about how this lockdown is causing unbearable pain and an exit strategy must be proposed which accounts for this. Because in quarantine, I feel I have been left to die.

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