Imagine this if you will – you are under the control of a dictator who oversees your every move. They tell you that you have to live within a tight range of numbers, measured in your blood. You will be tested on these numbers daily, often many times a day. You must not eat until they test you to see if you are worthy. Once they decide you are worthy (this time), they tell you which foods you can eat and make you measure how many carbs are in the food and how much medicine to take with the food. You can never just mindlessly eat. You must not exercise, or even go for a weekend walk or family outing, without their permission, and even then, you have to turn around and go home whenever they demand. While everyone around you is carefree and impulsive, you have to test and check and plan every single thing you do in your life, based on these numbers.

Day and night, you regularly have to jam a needle into your finger, or respond to the machine attached to your body that’s alarming and screaming at you to check it. Each day you have to take medicine and/or injections and/or wear another machine, all of the time. To appease the dictator you have to keep up to date with when it’s time to change the machine’s paraphernalia, even if it hurts, even if it’s incredibly expensive, even if you never feel free, needles and cannulas and plastic hanging from your body. You watch numbers and pecentages and graphs, to see if you are being a ‘good’ person or not, to see if your longer term health will be affected by your successes and failures…

If you get sick, the dictator gets in the way, shouting, ‘Look at me! What about me!!’ making you even sicker than other people, sometimes ending up in hospital due to complications. When events like covid-19 hit the world, they make you frightened that you won’t be able to get the medical supplies you need to survive; that you will die if you get sick; that you are even more alone and isolated than usual…

They stand over you, this loud, pushy dictator, shaking their fists and yelling, ‘If you don’t do what I say, you’ll lose your legs, go blind, end up on dialysis, become impotent, have a dead baby, damage all of the nerves in your body, have a stroke and die 15 years too early. If you try to avoid these things and go the other way, if you don’t get everything RIGHT, you’ll feel like you’re dying anyway, lying on the floor in a pool of sweat, shaking and shivering, feeling terrified and alone.’

It’s a bit like being in permanent covid-19 isolation…

You can’t escape the dictator. You can’t hide from them. You can’t ignore them. Everything you do is tainted and impacted by them, because of them, for them. You are intimately connected, you are one, but you wish they would skulk away.

Worse still, nobody sees this. Nobody knows the pain you feel, the struggles, the sense of loneliness…and in fact, many people make jokes about your dictator. They even blame you for having to live with it – you were too fat, ate too much, didn’t exercise – you let the frigging thing into your life. And so, they make memes, they talk about your lack of ‘compliance’, they laugh while you sit and cry.

Of course, you tell your loved ones about the dictator and they are sympathetic and kind, and yet, they can never know what it’s really like to live with this creature. Sometimes, you feel like all you do is talk about it, complain, stress, worry…and that if you don’t stop talking, everyone will close off from you, stop listening, leave you behind…

Despite all of your words, nobody really understands. Except others who also live with their own dictator. Others who know the feeling of them sneaking up behind you, unseen until it’s too late. Others who know what it’s like to end up with one of the complications you were warned about. Others who know what it’s like to watch the clock, each second like an hour, each tremble, each bead of sweat, each anxious, irrational thought, each morsel of food shoved down in a frenzy, leaving you exhausted. Others who know the rollercoaster of living a life between the highs and the lows. Others who know what it’s like to rely on technology to live, attached to machines, dependent on the affordable supply of life-giving medications and devices.

And don’t even get me started on what it’s like to live with this dictator if you have no access to life-saving medications and devices. If you live in poverty or violence or a country without stable government. If you are discriminated against for any reason. If you have disabilities or are not privileged and don’t have easy access to what you need to appease the dictator…don’t even get me started on that…

So, here’s the secret to survival in this regime – it’s others, the connections, the looking at someone’s face and recognising yourself in their eyes, the kindness of another person saying, ‘Yes! My dictator does that too!’ making things seem less problematic, learning to understand your dicator, even learning to love them, to see them as part of you, to communicate with them and work with them, rather than against them, that changes everything.

When you walk through life with others who truly understand your lived experiences, you can create a world where there is happiness and peace alongside the difficult days, where you can look your dictator in the eye and say, ‘Listen mate, let’s do our best and be kind to each other,’ where you can deal with whatever they throw at you, where you know you are alright, perhaps even better than alright, where you can reach out to another human being and say, ‘I know, it’s really shit, I feel like that too, but everything’s going to be alright,’ smile at your dictator and take his/her hand in yours, bruised fingers, tired mind, happy heart – because, we’re all in this together.

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