I was like most of the world, also thinking about coronavirus and so decided to write my first public blogs in over six months about my thoughts on it. My musings on feminism will have to come later……If you were asked what epilepsy and coronavirus have in common, you might look perplexed and then answer ‘not a lot’ and you’d be right – after all, one is a neurological condition and the other an infectious disease. Physiologically they just work in completely different ways. However, as someone living with epilepsy, in this blog, I would like to argue that actually living with epilepsy and living in a pandemic are not so different. Here are five reasons why I think so:
- Both the pandemic and epilepsy cause anxiety
The pandemic causes anxiety. Because of COVID-19 the world has woken up to the fact that we are not in control, we can do our best – we can social distance, wash our hands, invest in vaccines, but ultimately we are not in control of our lives. For many, many people this is now causing a debilitating anxiety that might take years to recover from. People with epilepsy have known this feeling of being out of control for years. We can take our meds, get a good night’s sleep, explore alternative therapies but ultimately, ultimately a seizure can happen, anytime and anywhere and the knowledge of that fact can create anxiety which is overwhelming. This is one reason living in the pandemic and living with epilepsy are similar.
- We don’t know enough about either condition
Right now, billions of pounds are being spent to find out more about coronavirus – we’ve made great strides but we still don’t know how long immunity lasts, when we will have a vaccine and whether there will be a second wave. There is still a huge knowledge gap. Considerably less has been spent on epilepsy research throughout the thousands of years that the condition has been around, yet some fundamental questions remain – six out of ten people with epilepsy don’t know what caused it, one third of people with epilepsy can’t find medication that works and there isn’t a cure for the condition. That is a lot of unknowns and the scientific unknowns are one of the similarities between the two conditions share.
- Treatments for both conditions have nasty ‘side effects’
In the UK a minimum of 40,000 people have lost their lives due to coronavirus and undoubtedly there will be more. Social distancing is one of the most effective ‘treatments’ for the pandemic, but it creates ‘side effects’ which are difficult to stomach. These ‘side effects’, as we know, include millions losing their jobs and all of us losing our personal freedoms. They are necessary, to prevent more loss, but they are also a bitter pill. Although it is somewhat different, the most common treatments for epilepsy – medication and brain surgery – for some people can have highly unpleasant side effects. For medications these can include impairment of cognition, changes in personality and drowsiness, to name but a few. The risks from brain surgery can be more serious. The treatments don’t always cause the side effects, just like the social distancing measures don’t always create misery for those adhering to them, but the risk that they can occur is there. We don’t know enough about either condition to reduce these ‘side effects’ from these treatments – to make them more nuanced, more particular to each person who has the potential to suffer and thus it is a commonality that both conditions share.
- Both create financial hardship
Coronavirus has caused financial hardship to millions of people and, by all accounts, will continue to do so, probably for years to come. In a similar vein and for various reasons, people with epilepsy suffer financial hardship – they have one of the lowest rates of employment among disabled people. In 2019 the Office of National Statistics found that just over a third (34%) of people who identified epilepsy as their ‘main’ health condition are in employment, compared to 76% of all working aged people . Thus, part of treating both coronavirus and epilepsy should be to help those affected get back to work and it is another reason why they in some way can be considered as similar.
- Travelling is a problem for people with epilepsy and those living in the pandemic
Up until recently millions of us have been urged by the government to ‘stay at home’ and only take short trips that were necessary. Now we can go out – but we have been told to remain vigilant – the virus is still out there – we shouldn’t travel in a car with people from another household; we should only travel by public transport if it is absolutely essential and, if so, we should wear a mask and if we are walking in a public space we should stay two metres apart from those that you don’t live with. But some people with epilepsy have always had to be aware of the risks that they take when they travel. Some people with epilepsy are told that they cannot drive and for others even going on public transport, walking or even cycling can carry risks. The potential for a seizure is always there. This isn’t to say, people with epilepsy shouldn’t go out, just like for the majority of people living in a pandemic doesn’t mean that they shouldn’t go out, it’s just that in both when travelling there can be a worry that something unexpected could happen.
However, the purpose of these musings is not to get everyone depressed. People with epilepsy, as with people with many other conditions, have been living for years with this way of life with little fanfare. For them, like me, it’s been a struggle. But what I have learnt along the way is the only way to deal with these challenges is to get on day-by-day and face the world that is in front of me, as best I can – no more or less. It’s possible; it is difficult; but it is possible. And in the same way with coronavirus – it is difficult – it creates all sorts of insurmountable challenges but I am sure it is possible for us all to overcome them.
4 thoughts on “What does living with epilepsy and living in the coronavirus pandemic have in common?”
Well written blog Sharon which explains the situation for you & the rest of us.
Thanks josie. Hope all is well xx
It’s a very personal blog.
But epilepsy doesn’t cause anxiety for everyone, nor does social distancing/the pandemic.
Regards the comments on social distancing in relation to the economy and job losses and financial hardships. Nicola Sturgeon commented when pressed to reopen the Scottish economy earlier that the economy could eventually be revived, the dead couldn’t.
The financial hardships relating to epilepsy, having seen cherry picking in scientific papers I’d loved to have seen how we compared displayed in the blog, reprint of a graph of graphic.
The risk assessment of going out is different I would say for someone with E and someone without E in the pandemic.
Whether you have a warning/aura contributes hugely to how you plan… and how much warning you get. Personally, I can normally get home or sat down somewhere.
Pandemic person without E pocket check – mask, gloves, sanitizer, keys, phone, wallet, sorted. Bye!
Pandemic person with E who gets a decent warning and feels good today pocket check- drugs, mask, gloves, sanitizer, keys, phone, wallet, sorted. Bye!
Pandemic person with E who gets a warning but feels a bit rubbish pocket check- drugs, mask, gloves, sanitizer, keys, phone, wallet, do I really need to get this? If I get some of it online I only need to visit one shop and that’s not far. I can shut one eye if things get really bad. Bye!
Pandemic person with E who is having a rubbish Day with their E pocket check – drugs, I’ll get it online when I feel better.
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Thank you for your comments. I agree that the pandemic and epilepsy effect each person different.ly However, the point I was trying to make was that epilepsy can cause anxiety – just as the pandemic can – although it doesn’t necessarily have to. The overall point I was trying to makes was that some people with epilepsy face the challenges that the pandemic faces in regular times, as well as these times.