The coronavirus pandemic currently has the UK (and most of the world) in lockdown, social isolation and for some, quarantine.
It seems that everybody is struggling. For those of us with disabilities and chronic health conditions however, it feels like the last straw after a lifetime of setbacks and intermittent isolation when health takes a turn for the worse.
I have focal onset temporal lobe epilepsy. My seizures deeply impair my awareness and can last from a few seconds to 30 minutes.
I was eventually diagnosed in 2014 after suffering from undiagnosed focal and secondary generalised seizures for a number of years. A diagnosis meant medical treatment, however, unfortunately, medication has not been able to control my seizures. I was able to work up until three years ago when I lost my job. My physical and mental health subsequently spiralled and simultaneously became intertwined where stress, anxiety and depression triggered seizures, leaving me bed bound for days on end and feeling even more depressed and overwhelmed by loneliness.
Post-seizure, my body goes into a metaphorical state of lockdown – restricted movement and crippling migraines preventing me from leaving the house. Frequent seizures leave me in a constant state of fragmented awareness, which also makes me pretty difficult to communicate with. I’ve also lost many friends and family over the years because of my epilepsy and affected states of mood, leaving me extremely isolated at times. Nonetheless, the friends who have stuck by me, I’ve been able to stay connected with on social media. But the downside to that is being stuck at home watching the rest of the world on social media living their best lives.
So I know what it’s like to want to go outside and not be able to.
Over the past year, although medication has not been able to stop the seizures completely, it has been able to reduce them, which meant that my quality of life was beginning to improve and I was finally able to start living a life outside of my house. It was liberating.
Until the pandemic forced me into lockdown.
Imagine my despair after finally making it outside my house to being told that unfortunately, I would be moving back inside until further notice. Having asthma as well as a neurological condition meant that once again, I am being imprisoned against my will, leaving my new life behind.
And having a disability that is triggered by stress and anxiety is extremely distressing in ‘normal’ times. We are now living in very unsettling times where nobody knows how long we’ll be socially distancing for; nobody can tell us how much longer we’ll be at risk for; in fact, nobody can tell us how long we have been at risk for.
Most people who are social distancing are still able to go out for daily exercise and go to the shops, but I’m currently having at least one seizure a week which leaves me out of action for days, only for the next week to begin the cycle all over again. Which means that I’m back to living a life I’d hoped I’d left behind.
Once again social media has become my lifeline to the outside world, but a very destructive one. I’ve seen many able-bodied people outraged at the perceived “injustice” of social distancing and the lockdown.
I’ve seen able-bodied friends continuing to meet up with groups of people so that they don’t have to miss out on their Saturday night drinks and just earlier this month, a friend posted a picture of themselves on social media at a local swimming pond that had been closed following the lockdown, having climbed the gates to continue their routine morning swim. While protesting the lockdown, they were also refusing to recognise that doing so was endangering the lives of loved ones as well as strangers. As I tried to appeal to them with reasoning, they accused me of attacking them for living their life the way they chose to and were not going to be told what to do by me.
I felt betrayed.
If you can’t rely on your friends for support during a lockdown, then by golly! Who can you rely on?
To me, it feels like disabled people have been forgotten. The guidelines from the Government are very ableist: the only time vulnerable people are mentioned is when we are reminded how at risk we are. And as people continued to stockpile essential goods, leaving pleas from the government and retailers falling on death ears, I felt even more forgotten as well as frightened.
This entire situation is unfair and is a situation that affects us all, but does anybody care how it is affecting those of us who are disabled with physical and mental health conditions?
Be aware that in no way am I saying that the majority of people in the UK haven’t been forced to make sacrifices. Because they have: people have lost loved ones, jobs, homes, because of the pandemic.
However, there are a minority who choose to ignore the sacrifices that have been made and refuse to acknowledge the consequences of their selfish behaviour.
I wonder every minute of every day how long we will be stuck indoors for and I also wonder for those of us whose existing health conditions and disabilities have been negatively impacted by the pandemic, how long will we be indoors for once this is over whilst we recover? How long will it take my body to recover from these recurrent seizures once the lockdown has lifted and life returns to ‘normal’?
And seeing able-bodied people moaning about the lockdown with no regard to how it’s affecting everybody else only aggravates my condition the more.
The longer our able-bodied neighbours continue to disregard the lockdown to protect society as a whole, the longer those of us who are disabled will be stuck at home with just our conditions and frustrations to keep us company.
Perhaps I’m missing something? Maybe if I was able-bodied I would join them? But then I’m not, so how would I know?