Finding certainty in uncertain times

Go onto social media. Pick up a newspaper. Ring a friend. Switch on the news. What are you guaranteed to encounter?

Speculation.

Often quite rampant speculation. In the internet age, we are all epidemiologists and experts in public health; we are all fortune tellers and soothsayers.

How long will these restrictions be in place? Two weeks, six months, eighteen months, forever. We’re flattening the curve; we’re protecting the vulnerable; we’re shielding the NHS; we’re acquiring herd immunity; we’re buying time to find a vaccine.

What further restrictions will be imposed? We won’t be allowed outside at all; the army will be on the streets; there’ll be rationing; we’ll have to eat cats and dogs.

Why has Italy been hit so badly? It has an elderly population; they were already in the middle of a flu epidemic; they have a high proportion of smokers; they’re a tactile culture; they didn’t obey lockdown; they live in multi-generational households; they closed the schools before the workplaces, exposing the vulnerable to the superspreaders.

How many will die in my country? 6000; 20,000; half-a-million; everyone. The death rate is much higher than we’re being told; much lower than we think; 10%; 0.4%. The statistics are different because of how they’re recorded; how many tests have been done; whether they died of coronavirus or with coronavirus. We’re two weeks behind Spain; three weeks behind Italy; ahead of the curve; better.

When will it end? When everyone has acquired herd immunity; when there’s a vaccine; when there’s a proven treatment; when it mutates to become more or less deadly; when we’re all dead from it.

And what will life look like afterwards? It’ll go straight back to normal; it’ll be entirely different; people will care more; people will hate more; we’ll be poorer; richer; safer; more vulnerable.

Speculation, speculation, speculation.

I understand why people are searching for answers – humans hate uncertainty. Uncertainty is dangerous. It’s terrifying. We don’t know how to protect ourselves from the unknown, so we feel vulnerable. People right now are living in a state of continual fear, and they’d rather live with an uncomfortable truth – a deadly but known danger – than endure the unknown.

Trouble is, in a situation like this, there are no answers. We don’t know how long it’s going to last; we don’t know how it’s going to end; we don’t know how many will die or what the world will look like afterwards. Ahead of us and around us is a vast, empty unknown. We’re walking on the edge of an abyss, liable to fall at any moment. How can you not feel anxious at such a time?

If it’s any help, as an autistic guy who spends his life living under the shadow of the unknown, you have to take comfort in the things that are known, and those things you can predict.

Like the fact that the sun will rise tomorrow. The sun has risen every day for the past 4.5 billion years; it will continue to rise long after we’re gone. The rhythm of the planets is eternal.

There will be two high tides tomorrow, and two low. The Earth and moon are locked in an endless ballet, and whatever happens with mankind, that will not change. It is immutable.

There will be life in one form or another for countless years to come. Every living thing on the planet has an unbroken chain of lineage extending back 3.5 billion years. Through billions of generations, every single one of your ancestors managed to reach sexual maturity, find a partner and reproduce before they died. Life today is the culmination of billions of survivors. There will be billions more generations to come.

We can’t say anything with such certainty when it comes to coronavirus. We don’t know when it’ll end or how, how bad it’ll be and who’ll survive to come out the other side. But we can say, with absolute certainty, that we will survive, and it won’t last forever.

How do I know this isn’t the end? Because modern humans have been around for 200,000 years. We’ve only had a germ theory of medicine for 150 of those years. We’ve only had antibiotics and antiviral drugs for 80. Yet we’ve survived Russian flu, Spanish flu, Asian flu, the Black Death, smallpox, leprosy, cholera, malaria, polio, meningitis, measles, HIV/AIDS, yellow fever, rabies, tuberculosis, typhoid, dysentery, diphtheria, and syphilis.

I was born in the 1970s. Most of the people reading this will, like me, have lived through the Troubles, the Cold War, the Iranian Embassy Siege, the Falklands, the Poll Tax Riots, shell suits, the fall of the Soviet Union, the Gulf War, Waco, Diana, Dunblane, Columbine, Y2K, 9/11, the War on Terror, 7/7, SARS, MERS, Swine Flu, Bird Flu, the Credit Crunch, 2012 hysteria, the Paris Terror Attacks, the knife-crime epidemic and Brexit. We’ve taken all that life has thrown at us, and we can take plenty more.

If you want certainty, there it is. We’re going to survive. We’re going to get through this. It’s the one thing I have no doubt about.

The unexpected upsides of coronavirus

While Covid-19 is a steam roller of awfulness flattening everything in its path, it’s important to remember all the good things that life has to offer. Turning a frown upside down is vital for our mental health in the coming weeks and months, so here are some of the positives to come from social isolation and lockdown.

1. You can finally indulge your hobbies

That book you’ve been meaning to read but never started because it was too big? Now’s your opportunity. The typewriter mocking you from the corner of the room? That novel isn’t going to write itself. And the musical instrument you always wanted to learn? With YouTube videos instructing you in everything, there’s never been a better time.

Or you can sit on Facebook and keep checking coronavirus updates and slowly go insane – the choice is yours.

2. You can create a healthier family life 

Tradition might be a dirty word these days, but there’s definitely something to be said for taking your foot off the gas, slowing things down and actually spending time together as a family. Free from rushing around from here to there, desperately trying to clean that school shirt while shuttling the kids to football and ballet and gymnastics, we can get back to the simpler things, like having fun together, playing games, and family dinners. You might even find that, without the endless stress, you actually like the other members of your household for a change.

Of course, I also think 2020 will have remarkably high rates of domestic violence and divorce, but hey, let’s try and make the most of each other at this time in our lives.

3. You can learn to appreciate ‘the little things’

Humans are programmed not to notice, or appreciate, the familiar and everyday. It’s the reason you stop smelling freshly-baked bread after a few minutes, and why after the novelty has worn off, lottery winners are just as miserable rich as they were poor. Two weeks ago, we were bored with our dull world; today, everything in it that we can no longer do seems so precious – even just the ability to go to the cinema, have coffee with friends, or walk down the street without worrying.

If coronavirus holds a lesson, it’s to learn to appreciate those little things that we take for granted. Consciously acknowledge those things you’re grateful for, like a roof over your head, or personal freedom, and continually remind yourself of it when this is over. Like water to someone dying of thirst, we might find ourselves far happier with the everyday when the restrictions finally lift.

4. Home working lets you re-evaluate your work/life balance

All those times they told you that you couldn’t do your job from home? Turns out you could. Those meetings they said couldn’t be done by email or teleconferencing? Ha! Without the dreaded commute, how much more time would we have in the morning? How much better might our working conditions be? And how many cars would be taken off the road, making everybody happier? Coronavirus might lead to a new model of business that is less likely to drive you to the brink of despair.

And even if it doesn’t, at least you will know which you prefer. After being locked down with your wife and kids, you might even find you never moan about going into work again!

5. Pollution is clearing up rapidly

A lack of cars on the road and planes in the air, and entire economies grinding to a halt, has had the effect of reducing carbon emissions and clearing a lot of the crap floating around in the air. Indeed, given that thousands die each year from the effects of air pollution in cities, some are claiming that in China alone, coronavirus has saved the lives of 4000 children under five and 73,000 adults over seventy.

Of course, it won’t last long, since as soon as this crisis is over we’ll be burning everything twice as fast to make up for lost time, but people can make the most of it while they can. In Venice, for example, a dearth of diesel-spewing tourist boats churning up the canals has reportedly led to a sharp increase in water quality – the water is so clear you can actually see fish swimming in it.

And if nothing else, at least we’re not going to be hearing about Greta Thunberg and the impending doom of climate change for the next few months, and my mental health is already better for it!

Explaining coronavirus isolation to my kids (and wife)

My two-year-old is too young to understand what’s going on in the world, but my four-year-old is definitely switched-on enough to know that something’s up, and since her response to not being able to go to gymnastics was a tantrum, I figured it was time to put on my dad hat and level with her.

‘Lots of people are getting ill,’ I said. ‘Most of them will get better; many of them won’t even realise they were ever even ill; but some of them won’t get better. It’s very bad for old people, and people who are already ill. But you don’t have to worry about it – it doesn’t really affect children.’

‘Why not?’ she asked, sharp as a tack.

‘Nobody really knows,’ I replied. ‘Trouble is, while you might not get ill from it, you can carry the virus and pass it on to others and make them ill. And we don’t want to do that. The government – the people in charge of the country – they’ve said that we shouldn’t go and see people unless we absolutely have to. That includes gymnastics.’

‘But I want to go to gymnastics.’

‘I know, sweetheart. But – look.’ I got three books off the shelf and placed them on the floor, then got six teddy bears. ‘Most of us are going to get this. For most of us it’ll be no worse than a cold. But a lot of people will have to go to hospital. There are only a certain number of beds.’

I took the first teddy bear, and touched its hand to the second. ‘This one’s ill,’ I said, then put it on the first book. ‘He gets a bed in hospital. Now the second bear is ill.’

I touched the second bear’s hand to the third’s, then put it on the second book. ‘He gets a bed too. But now the third one’s ill too.’

I had the third bear touch the fourth and take up the last bed. ‘Now this fourth one’s ill, but there are no beds, so he can’t get better.’ I then showed the virus infecting the remaining two, but there were still no beds.

‘This is what happens if we all keep going to gymnastics and seeing our friends and going to cello lessons,’ I said. ‘There aren’t enough beds, so they can’t all get better. Now let’s see what happens if we don’t do those things.’

I reset the simulation and had the first bear get ill without touching the second bear, and take its bed, then the second, and then the third.

‘But this time,’ I said, making the first bear stand up and jauntily walk away, ‘this bear gets better and comes out of hospital. That means that when this bear gets ill’ (I picked up the fourth bear) ‘there’s a bed for him. And when the second bear gets better’ (I picked up the fifth bear) ‘there’s room for this one, too.’

I repeated it with the sixth bear and showed them all eventually leave the hospital. ‘You see?’ I said. ‘They all still get ill, but instead of all getting ill at the same time, and not having enough beds, they get ill over time, and have the best chance of getting better. That’s why we can’t go to gymnastics right now. We all have to look after the people who need hospital beds – all of us – and the best way of doing that is to do what we’ve been asked to do.’

She got really excited by that and wanted to do it herself, so she re-enacted what would happen if everyone got ill at the same time (not enough beds) versus what would happen if we flattened the curve. Success.

Explaining it to my wife, who is both autistic and has Emotionally Unstable (Impulsive) Personality Disorder, is altogether more difficult.

She’s adamant that she’s still going to see her friends because ‘it means, just hang out with people you know, not strangers.’

It doesn’t mean that at all. You’re just as likely to catch it from friends as strangers – more so, as you’ll be in closer proximity.

‘Everyone I’ve spoken to says they’re still going to go to swimming and gymnastics.’

Well they shouldn’t – what part of, ‘Now is the time to stop ALL non-essential social contact’ is so difficult to understand?

‘I don’t care what they say, they can’t tell us not to, they can’t tell us what to do.’

They can, and they have.

‘I think it’s stupid and pointless.’

I had no idea you know better than the Chief Medical Officer, the Science Advisor to the Government, and all the experts at the World Health Organisation.

‘But we’re not ill or over 70 or pregnant.’

No, but we could carry it to someone who is and they could die, or take the bed away from someone who needs it. Stop being so selfish and bloodyminded. They wouldn’t be asking us to do this without good reason. Our grandparents went to war, we’re being asked to stay home and watch Netflix.

‘I’m not cancelling anything. You can’t stop me.’

It’s not me telling you to do it, it’s the government. You know, the people who pay your benefits. It’s incumbent upon us to be informed, responsible and conscientious citizens, and that means avoiding ALL non-essential social contact, even if it inconveniences you.

‘But it doesn’t mean not to go to gymnastics or see your friends.’

That’s exactly what it means. Is gymnastics essential? Is seeing your friends essential? Is going swimming essential?

‘You just don’t understand it because you’re autistic and you take things literally.’

What’s not to understand? There’s no room for misinterpretation; there are no shades of grey here. It’s as black and white as it comes – avoid ALL non-essential social contact. Not some, not most, not the ones you don’t mind dropping, but ALL. Jesus Christ, we’re talking about people dying here.

I even made her watch tonight’s press conference on YouTube. She watched him say, ‘Now is the time to stop ALL non-essential social contact,’ and her response? ‘He doesn’t mean all.’

Dealing with a global health crisis is one thing; dealing with a stubborn, recalcitrant ass-hat who has no intention of abiding by the government’s instructions is another altogether. God forbid we get locked down for fourteen days together or I’m going to have to lock the doors and hide the keys.

Be responsible, goddamnit. There’s a time to rock the boat and a time to do as you’re told. It’s pretty damned clear which this is.

EDIT: this policy is projected to reduce the UK death toll from 260,000 to 20,000. It’s not a lot to ask for a thirteenfold saving of life.

The little things that kill: living with depression

As humans, I think we’re programmed to believe that only the big things matter. As kids, we innately believe that accidentally breaking the TV is worse than deliberately breaking a pencil, and even though we develop a better understanding of morality as we grow older, we continue to associate damage with size. I’ve argued before that we can see evidence of this in conspiracy theories, as we mistakenly believe that large effects must have equally large causes, and so invent labyrinthine plots to fit reality to our preconceptions, rather than our preconceptions to reality.

The same is true when we look at our lives. We spend so much time looking at the ‘big picture’ – our income, job, achievements, social status, family relationships – that we miss the little details that make up the whole. So often we reduce the wondrous complexity of our individual experience to a linear sliding scale, with ‘success’ at one end and ‘failure’ at the other, and pigeonhole ourselves as monolithic entities, without appreciating that we are a multitude of successes and failures, strengths and weaknesses – we are not the sum of our parts.

Yet despite knowing better, we apply this same misunderstanding to mental health.

In the media, in fiction, among our families and friends, the emphasis is always on singular, disproportionately large and simplistic explanations. A person is depressed because they’re single, or they lost their job, or they’ve suffered a bereavement; they kill themselves because of a relationship breakdown, money worries or a sudden trauma. It’s comforting to think like this, because it means the causes can be identified, and therefore treated. Like a weed growing in our minds, all we have to do is cut out the roots, and the mental illness will wither and die.

Unfortunately, it doesn’t work like that. For most of us with lifelong depression, it doesn’t have a single identifiable cause. It’s not a weed that can be excised, but a symbiotic parasite so interwoven throughout our being that the only way of killing it is destroying the host. I’m always suspicious of people who say they used to be depressed but they’re now ‘cured’, because I don’t believe it ever really goes away. Sometimes you’re winning, sometimes you’re losing, but you never stop fighting, and just as in any war, there are casualties in this conflict that can never be made whole again.

What people don’t want to acknowledge – what is perhaps terrifying to accept – is that there are millions of causes of depression, most of them so small and inconsequential that they pass us by unnoticed as the parasite slowly winds it’s way into our bodies. You don’t suffer a shock one day and wake up the next with depression – if only it were that easy! No, it creeps up on you, little by little, so that by the time you realise how much of a hold it has on you, it’s too late.

It’s the everyday things, the little things that don’t seem to matter, that lead you into depression. It’s the family get-together you skip because you can’t face the hassle. It’s the meal you miss because you can’t be bothered to cook. It’s the text message from a friend you mean to respond to, but put off so long you no longer know what to say. It’s the hobby that you can’t seem to find the time for any more. It’s the chocolate bar you insist is a one-off treat as the empty packets pile up around you. It’s yesterday’s clothes you put on because it’s too much effort to pick out a new outfit. It’s the letter you don’t open because it looks scary. It’s the lawn that grows too long because there are more important things to do. It’s the cross word with your partner that doesn’t get resolved. It’s the walls you put up against the people you love.

And it’s the escape you sink yourself into, the dark pit where you can curl up and feel safe. It’s the irritation you feel when people try to reach out to you. It’s the excuses you use to avoid anything that might help. It’s the growing awareness of how awful you feel, and how awful you are, and how awful the future appears, and how little you want to leave your isolated little hole.

That’s depression. Not a comet landing in your neatly ordered life and leaving devastation in its wake – it’s the glacier that slips slowly and silently and unstoppably into your world, covering everything in an impenetrable sheet of ice, where you can see your friends, your family, the sun, but they’re like ghosts behind glass, drifting away in a dimension you can never reach.

And the worst part? Most of the time you don’t have the self-awareness, the reflexivity, to even understand what’s going on. You think this is normal.

It’s only rarely, very rarely, that we can see ourselves from outside, when we have what alcoholics call ‘a moment of clarity’, or drug addicts ‘hitting rock bottom’, where we understand what we’re doing, and where we are, and the damage we’ve done to ourselves and others with our self-destructive behaviours. Most of the time we feel numb, and pointless – most of the time we don’t think what we do matters to anyone else – but for a few brief moments the cloud lifts from our minds and we can see how we fit into the world around us, and the impact we have on our loved ones, and we finally feel something, albeit bitterness, pain and regret.

And then, all too soon, it’s gone.

So what should we do in these moments? We have to focus on the little things. We have to do the opposite of what we want. If we want to hide in a dark hole, we need to step out into the light. If we’ve put up walls, we need to tear them down, hug and kiss our spouse, to enact the affection we no longer feel until we feel it again. We need to play with our children to bring back some of the joy. We need to laugh. We need to respond to friends and family. We need to restart the hobby we dropped. We need to open the post, mow the lawn, and make tomorrow a little easier than it is today.

In short, we need to resume the habits we’ve dropped, set us back on the right course, and do it quickly before the cloud returns in the hope those habits will hold us together until our next moment of clarity.

The little things got us here. Focusing on the little things will get us through.

For a time, at least.

Working on yourself isn’t selfish

Regular readers of this blog will know that I’ve been struggling with mental illness for a while now. Well, all my life in fact, but it’s been particularly severe of late. I’ve pushed myself past the point of sanity, kept struggling on far longer than I should, sacrificing my health, my hobbies, my self-esteem and my dreams in order to be the best father I can be.

And after four years I’ve burned out and can’t give of my best anymore.

I’ve come to realise, as I should have done years ago, that you can’t look after anyone else if you don’t look after yourself. It’s like when a plane is going down and the oxygen masks drop from overhead – put your own mask on before you help the children with theirs, otherwise you pass out and you all die. I thought that being miserable was part of the job, that feeling empty and unfulfilled was a cross that every parent has to bear and I could stubbornly push on and survive on willpower alone. Now I know better.

You can’t be a good parent if all you do is parent. You have to leave the kids, go out and experience all the wonders that the world has to offer, so you can bring that wonder back into your life and give it to your children. Without balance – without time away to gain perspective – you become stuck in unhealthy and repetitive cycles.

need down time, hobbies and personal goals that aren’t centred on parenting. I need to find space for Gillan the man, alongside Gillan the dad.

At school I was told I wouldn’t find fulfilment anywhere outside a university, and they were right. After my first degree, I was strongly encouraged to do a PhD. Instead, I got a second degree and a Masters, after which I was even more strongly encouraged to do a PhD. That was 2015, a few months before my daughter was born and studying had to take a back seat.

Now that she’s started school and my second daughter is two, I’ve decided I want to go for my PhD, and it’s the first time in years that I’ve felt excited about something, where the future seems to hold possibility and light instead of an endless slog of crushed hopes and forgotten dreams.

I’m not unrealistic. With a needy wife and two young kids, I’ll have to do it part time, and without two beans to rub together I’ll have to secure funding, but with a will to succeed I don’t think these difficulties are insurmountable. And as it will make me a better, happier, more contented person, I will be a better father and better husband. To be frank, I’m not good at either right now, and if it keeps going as it is, my marriage is going to fail. I’ve got nothing to lose and everything to gain.

Unfortunately, my decision has been met with decidedly less enthusiasm than I imagined. I’ve been told by various people – people I thought would understand – that I ‘can’t’ do a PhD; that I have ‘delusions of grandeur’; that as a father, with a family to think of, the time and opportunity has passed. The implication has been, almost universally, that to do a PhD would somehow be ‘selfish’, and they think less of me for even entertaining such a notion.

I hadn’t realised that having children means your life is over. Forget having hopes and dreams, forget trying to improve yourself and your situation in life – where you are when you have kids is where you will remain until you die. I should just ‘man up’ and struggle on, I suppose, keep feeling horribly empty, irritable and unhappy, keep failing as a husband and a father, so long as I don’t upset the apple cart. How selfish of me to try and escape that destructive mentality and make something of myself, and in the process become the person I want to be.

There’s nothing noble about sacrificing your dreams when you become a parent. For some people, having a family is their whole life. It isn’t for me. I didn’t cease to be an individual the moment I slipped on my ‘dad hat’. I have many roles to play in this world and I refuse to be pigeonholed into one that is only part of who I am. Turning away from life to focus on on your children makes you insular, one-dimensional, and blind. I’d rather put out my eyes and engage with the world by touch than choose to ignore it.

It isn’t selfish to work on yourself. Nor is it desirable. It’s essential. It makes you a better person and a better parent. Would I want my girls to give up their dreams when they become mothers? No. I’d expect them to take their children with them as they shoot for the stars. And that’s the example I want to give them. Why settle for one or the other when you can have both? Life isn’t about shutting yourself off and staying in the same place, it’s about opening up and going on a journey. This river has been stagnant long enough; it’s time to let it flow again.

No matter what anyone else thinks.

So SAD

I’ve written before about suffering from Seasonal Affective Disorder. Every year I hibernate, stop going out, stop writing, stop reading – just eat and sleep and snap at people over trivialities. And while this year is no different – I keep stuffing my face with chocolate, going to bed two hours earlier than usual and falling out with family members on a weekly basis – I’ve noticed an addition to my symptoms this year:

An overwhelming feeling of sadness.

It’s weird that having something called SAD, I’ve never particularly felt sad with it before. Moody? Sure. Lacking in energy, filled with self-loathing and totally uninterested in anything other than binge-watching old episodes of Arrested Development? Naturally. But sad? No, I’m too depressed to be sad.

For those who don’t suffer from depressive illness, allow me to explain the difference between depression and sadness.

Sadness is an emotion, a feeling, like joy or fear. You can feel it in particular locations in your body, and it provokes a visceral physiological reaction – a sinking chest, a trembling lip, tears. It is transitory and ephemeral, and stimulated as a reaction to something going on in your life – a death, a rejection, a painful memory. It comes in a rush, can be incredibly intense, and then goes away again, without leaving a fingerprint in your soul. That is sadness.

Depression, on the other hand, is a mood – an ongoing, long-lived, debilitating way of life that pushes down on you and pervades your entire body, mind and spirit. It’s not a feeling but a way of feeling. There are no ups and downs, no bursts of colour, just an ever-present gloom. It exists irrespective of what else is happening in your life, and though it is sometimes less pronounced, it never truly leaves you, a shadow that lurks in the recesses of your being and stains all that you’ll ever become. That is depression.

If sadness is a thunderstorm, horrible and exciting, depression is an endless grey sky, without wind, without rain, and without the prospect of ever seeing the sun again.

Which is why it’s odd that this year, this gripping, all-consuming sadness keeps creeping up on me and washing over me, stopping me in my tracks.

Contrary to the philosophy underpinning Cognitive Behavioural Therapy that the ancestor of every feeling is a thought, this feeling only comes when I’m not thinking at all. If I’m doing something that requires even the slightest modicum of brainpower, I’m fine – at least, as fine as I ever get. But every time I stop or do something so routine I don’t even need to think about it, I get hit by a wave of sadness.

It works like this – I’ll be watching the kids play, making sure they’re not killing each other, and all will be well and good. I’ll walk into the kitchen to make myself a coffee, flip on the kettle, and – BOOM! – I’m sad. So sad.

Or I’ll be doing the shopping, or driving the car, or playing with my kids, and the moment I stop, this dreadful sadness slaps me across the face. So I keep active doing word puzzles, watching game shows on TV, completing online quizzes so that I’m constantly thinking. Whenever I stop thinking, that’s when it comes – this feeling that I’m going to burst into tears.

People have suggested my antidepressants have stopped working, that I should go see a doctor. I can’t imagine why that would be the case after fifteen years on them. Besides, I saw a psychiatrist around eight or nine years ago to ask him that very question, and he said that you don’t build up a tolerance to SSRIs, needing to up the dose to receive the same effect. No, he said that depression just happens to be one of those things I have to live with.

And besides, sadness isn’t depression, so why would antidepressants control it?

I just have to wait for the spring again, even as it gets harder year on year. And hope that these thunderstorms will go away and leave me with my overcast sky.

The value of persistence

A while ago I posted An open letter to the Mental Health Community arguing that when confronted by a person with both autism and mental health difficulties, they found it all too easy to fob us off to the Learning Disabilities Team without properly investigating our problems. The specific cause of that letter was their refusal to see my wife, despite her deteriorating mental health, because of her autism. Hardly a stellar job of ‘care in the community’.

While not deigning to see her, they did, in absentia, recommend the GP put her on a second antidepressant in addition to the one she was already on, which caused her mood swings to become even more wild, and resulted in massive disruption to our home life without any follow-up. So my wife stopped taking all her antidepressants, and things got even worse. Again, a signal failure of the Mental Health Community to provide much-needed help and support to a person (and family) in distress. (Learning Disabilities, by the way, refused to see her because, apparently, her IQ is too high. So where exactly do people with autism go to get specialist help?)

I will be honest with you – thanks to my wife’s unstable, abusive, and downright crazy behaviour, her unwillingness to address her issues, and our increasingly fractious relationship, I have seriously considered walking out and taking the kids with me. It has been a year of absolute hell, and there is not one person I’ve spoken to who thinks I should stay, and fifteen or so who have told me I should go.

My response has always been the same: I want to make sure I’ve tried everything to make it work before I go so that if one day my kids ask me if there was anything more I could have done, I can honestly say no. People tell me I have passed that point, but I do not need to justify it to them, only myself and my children. But it has been far from easy.

Unwilling to give up and convinced there was more going on with my wife than simply autism, I read everything I could about developmental disorders, learning disabilities and mental health issues, until I eventually came across something called Emotionally Unstable Personality Disorder of the Impulsive Type. Of the five criteria in ICD-10, my wife fit all of them, and you need three for a diagnosis. Of the nine criteria on the NHS website (five required for a diagnosis), she fit eight.

Her impulsive behaviours without any thought of the consequences, her self-destructive tendencies, her mood swings and emotional overreactions, her uncontrollable behavioural explosions, her lack of opinions and minimal sense of self, her terrible fear of abandonment, her need for continual reassurance, her turbulent interpersonal relationships, her refusal to follow through with anything that doesn’t give instant gratification, her ‘zoning out’ whenever anything ‘difficult’ is discussed, her hypersensitivity to perceived criticism, her paranoia at times of stress and break from reality when she is highly emotional, her profligate spending, her binge eating, the fact she swings from obsessing over me to hating me, and that she can never be relaxed or comfortable – it all fits EUPD.

And it’s hardly a new thing – her school reports aged five, six, seven say the exact same things: gives up on anything that’s hard; does not apply herself; struggles to control her behaviour; will not take instruction or correction; retreats into her own world and is unreachable; does not mix well with the other children; terrified of failing; requires constant reassurance; moody; angry; difficult.

Armed with this knowledge, I wrote a document outlining all the symptoms and diagnostic criteria of EUPD, and all of my wife’s behaviours that fit these conditions, and examples of each. We then went back to the doctor, who again referred my wife to the Community Mental Health Team, and attached this document. Lo and behold, they agreed to see my wife this time.

She saw them today with her Care Manager. Yes, they said, she almost certainly has Emotionally Unstable (Impulsive) Personality Disorder. They are referring her to a specialist to diagnose her and giving her twelve weeks of CBT. It is a lifelong condition and they will work with her. Thank goodness.

I suppose I should be relieved, and thankful. But here is my issue: I am not a doctor. I am most certainly not a psychiatrist. I am in no way a mental healthcare professional. So why the hell was it down to me to investigate, research and suggest a potential diagnosis? Why on earth did I have to fight and struggle and browbeat and beg and eventually find the answers for myself before anyone would see us? And why, if it’s so plain she has a personality disorder, has it taken until she is 32 years of age for someone to spot it? Not to mention that if they had seen her seven months ago, it would have saved my family a shitload of soul-searching, heartache and pain. Seems to me there’s not that much ‘care’ in healthcare.

But at least this shows the value of persistence. If at first you don’t succeed…do their job for them.