L is for lockdown

Lockdown with a chronic illness, lockdown with a disability

After reading an article by Mimi Butlin, I felt it was important for me to comment on the surge in global conversation surrounding isolation due to Covid-19. People have been forced to abruptly change their routines, put their careers on hold and succumb to their freedom being taken away. I am a Fowlers syndrome sufferer and I have battled with change and a form of isolation for 10 years. Although social media and politicians keep reminding us that were all in this together and that inclusive spirit has given me a lift over the last couple of weeks, I can't help but feel like my experience - and the realities of the chronically ill and disabled community – are different to the able-bodied experience.

I myself, like many people living life with a disability or chronic health issues, have had to battle with extreme change since diagnosis. Honestly, I have many anxieties surrounding change and at times have struggled to adapt. However, adaptation for me has become a real coping mechanism. The more barriers my illness has created for me, the more I have been determined to prove people wrong and break them down – I admit, at times I may have taken this to extremes and pushed myself too far but hey, it’s not until something is taken away from you that your fighting power is truly tested. At times my illness has left me housebound and feeling lonely but developing ways of coping is crucial. Life pre-Covid-19 was not full of articles about how to survive periods of isolation or social deprivation, neither were there an abundance of virtual resources at our fingertips which enabled people to feel more connected and it felt like there was little concern given to the mental health issues caused by isolation. Unfortunately, (and I get, it’s nature of the beast) it seems that only now healthy people are having to deal with the realities that the disabled community experience on a daily basis - that isolation and the importance of healthcare is a topic of conversation.

Although I am lucky enough to be surrounded by such understanding friends and family, it has been inevitable that at times I have felt so alone in my situation. The whole world is feeling like they’ve lost their purpose currently with restrictions on their lives being put in place – chronic health issues cause a loss of purpose and control which forces you to have to find a new you, a stronger you. I hope this period of isolation will reveal people’s strengths, not weaknesses. I hope it will show people how difficult it is to not be able to pop out to a coffee shop or attend social gatherings at weekends. I hope that people will savour quality time with their friends and family, a quick hug or wine-fuelled chats where you stay up all-night talking. I hope it will make people not take the little things for granted.

We are being told and reassured that this Corona crisis will end someday and I understand that this is comforting as battling with the unknown and loss of control is something that is a constant enemy of mine. I would pray and beg that one day I'd recover and that there would be an end date. I used to think that if I knew there was an end date, I knew I'd be fine because I'd have that reassurance that it would be someday be over. Now I know it is never going to be over. This is the reality for many people with a long-term condition, many people with disabilities and many people with invisible illnesses. One thing I do wish for Covid-19 to leave behind is a deeper understanding for those battling with life limiting health conditions daily.

As a community, we need more able-bodied people to remember what it was like when they were experiencing unemployment, when they were alone, when they were worried and scared for their health. Most crucially, they mustn’t forget what it was like when they were not in control of their lives because that’s what illness does to you. I hope that this current crisis will mean that friends and allies will visit us in hospital or our homes when they're rejoicing about their freedom. I hope that chronic health and in particular invisible illness will be given the time and space it deserves in mainstream media and activism.

L is for lockdown – let’s not forget what it feels like to lose control, freedom and social interaction - even when all of this is over.

Written 4th April 2020