There are a few things we need to talk about regarding the coronavirus which I fear are going to be missed in the churn. Please listen, because this is going to affect a lot of people.
We are still talking about the virus as if its course is: ‘get it, and either die or recover’. That is not true. The other course is ‘not die, but not recover either’ or ‘recover but not to previous health’.
When I was 19, I woke up one day and couldn’t walk properly. Over the next few months, my ability to function disappeared day by day until I was mostly bedbound.
As a young woman with pain and exhaustion, I was told (of course) initially that it was attention-seeking, or psychosomatic, or lying. Eventually they traced it to post-viral fatigue syndrome caused by a severe bout of flu. I had recovered, but it had taken a toll. Many, many, many years later I would discover that it wasn’t just ME, but the post-viral effects activating the acute form of an underlying undiagnosed genetic condition.
Viruses can have catastrophic ongoing effects on a person’s health, long after they have technically ‘recovered’ from them.
Take SARS, which was more deadly but left lasting effects on a large percentage of the people who had recovered from it. After two years, many were still experiencing ongoing fatigue, many needed medication to stay employed, and many had not made it back to work at all.
This is one of the major reasons Boris’ ‘herd immunity’ idea was so catastrophically dangerous – ‘just letting everyone get it’ will lead to a massive uptick in people experiencing post-viral symptoms, many of whom will go on to become permanently disabled. There are also going to be people becoming disabled because they have conditions which are going unmanaged in the chaos. There are secondary risks to the virus.
Those people will then be all entering a system designed to cause trauma and hardship at the exact same time. The DWP already cannot process what it needs to process, because the system has been designed to be cruel and labyrinthine, and most resources are poured into tribunals.
It is absolutely, categorically imperative that the DWP immediately suspends its protocols which block people from accessing support they need. We must have a system which can rapidly adapt to a large influx of newly disabled people in a world where we’re still going to be dealing with the wider aftereffects.
We have to understand this reality, and plan for it right now instead of when a whole lot of people discover for themselves what ‘grave and systematic violations of the human rights of disabled people’ (UNCRPD judgement against Westminster) actually means.
Waiting times must be slashed, the presumption against the applicant must be abolished, interim measures to provide for applicants must be available from the moment of application while waiting for it to be processed.
The regime of cruelty must be permanently dismantled and all responsible for it not given positions of responsibility in the new one. You can look to Social Security Scotland for inspiration – we have built a system based on fairness, dignity and respect. Learn from us, as we learned what not to do from Westminster.
And to the people who get Covid19 and find their recovery does not follow the expected curve, this is vitally important:
DO NOT PUSH YOURSELF TO RECOVER FASTER.
IF YOU ARE EXHAUSTED, DO NOT MAKE YOURSELF ‘DO MORE EVERY DAY’.
Almost everyone I know with conditions like this, me included, made themselves so much sicker than they needed to be in the early stages because we were programmed to believe that we just need to ‘beat it’ and ‘not give in to it’ and ‘push through it’.
I ended up needing full-time care for three and a half years after I first got sick because I thought I could exercise my way out of the tiredness and achiness. I listened to people who told me I wasn’t trying hard enough to get better. It destroyed my health.
Give your body time to heal. Speak to the disability community for support and ideas, because many of us have been there. This culture’s approach to recovery is so unbelievably toxic and does immense damage, but most people don’t know that until it’s too late. I didn’t learn about any of this until I’d been sick for years. I didn’t realise there were systemic issues with the way women with chronic conditions are treated, or that the fixation on ‘pushing through it’ and ‘beating it’ can destroy your life in some circumstances.
With chronic conditions like the ones so many people are about to start experiencing, the key is to learn to work with your body. Learn its cues, when it’s telling you it can’t do any more, when it can be pushed, when it really, really can’t.
Your life will be different from before but it doesn’t need to be a tragedy. You can build an amazing life in your new circumstances if you are willing to adapt. My life is rich and meaningful in ways I could never have imagined. Don’t waste years and the energy you do have fixating on how you think your life ‘should’ look. Do what you can with what you have.
Your life may well return to ‘normal’ after a period of time if you let your body heal. That’s fantastic. But if it doesn’t, that’s ok too.
Learn to ask for and receive help with love and humour – this is one of the hardest lessons in our culture. You’re not a burden or ‘weak’ for needing help. Everyone needs help. This nightmare should have shown us how much we actually rely on other people.
To everyone else: please, please, please take care with people who’ve been sick. Watch for signs of post-viral symptoms and DO NOT dismiss the person’s worries or try to guilt them into pushing past their limits.
Take care of each other.
And tear the DWP regime down so a true social security safety net can be re-established. Everyone will know someone affected by this. You already did, but it’s going to get worse now. Please join us in the fight.