Friday, 13 March 2020

Self-isolation gives a small insight into the life of the chronically ill

It’s hard to do anything at the moment without hearing about the Coronavirus. Turn on the TV – there’s another news update; scroll through Twitter – every other tweet mentions COVID-19; or go to the supermarket and everyone is discussing panic buying and where all the pasta has gone. I don’t want to add to all this with another post directly about the virus, but I would like to talk about an indirect result. People are now being told to self-isolate for seven days if they begin to show symptoms and for a lot of chronically ill people, it has been quite difficult to see some of the responses to this. Self-isolation seems to be giving ordinarily healthy people a small insight into what life can be like for someone with a chronic illness or disability. 

Social isolation and being housebound is often part and parcel of having a chronic illness or disability. Obviously, everyone is affected differently by different illnesses, but a large number of chronically ill people will experience being unable to leave their house for months or even years on end. During my years of illness, I have been through periods of being housebound – too ill to even leave my house for medical appointments at times. And there are others who have it far worse – confined to their home, or even their bed, for year upon year with no end in sight. 

And it’s bloody hard; I’m not going to lie. Staring at the same four walls, only seeing close family (if you’re lucky to have them around) and having no idea how long this will go on for. Seeing the sun through your curtains but not being able to even go out in the garden to feel it on your face. Hearing people walking past your house, laughing and joking, and wondering when, or if, you will ever do that again. Seeing posts and photos on social media of friends going on days out, holidays or even just going to work, and feeling so far detached from the world outside your door. It gradually drains the hope from your body and leaves you wondering if you can carry on.

Over the last few days, I’ve seen so many people discuss how awful it will be to have to stay in your house for seven days and others talk about not knowing how they will cope with it. And I get it, I really do. If you’re healthy and have never had those kinds of restrictions put on you before, then I understand that it must feel horrible to suddenly have your freedom taken away from you. But that doesn’t stop me feeling upset and frustrated to see so many people complaining about a life that thousands of us have to live for years. 

Although the current situation is scary and worrying and that shouldn’t be dismissed, I do also feel that it’s important for us as a society to learn things from it. And a big part of me hopes that some people at least might realise what chronically ill and disabled people can go through on a daily basis. Being stuck inside, having to ask for help, your plans being cancelled, no contact with friends – all while dealing with the constant worry of illness. It isn’t just seven days isolation for a lot of people – there is no end date for many of us. We live every day trying to deal with complex health problems, as well as the grief and frustration that comes with missing out on things other people may take for granted, and having to cancel plans at the last minute. Going to the shops, meeting a friend, a day out, a holiday, your birthday, your wedding, a vital medical appointment. The list goes on.

The majority of people who have to self-isolate will hopefully recover within a couple of weeks and can go back to their daily lives. And as the pandemic reaches its peak and begins to slow down, lockdowns will end, events will be rescheduled, holidays rebooked and some form of ‘normality’ will resume. But those chronically ill people won’t be leaving their houses with everyone else. They will still be sick, held prisoner in their own homes. 

And I really just hope that, as people become well again, they will remember what it felt like to suddenly lose their freedom and be confined to the house. And that maybe, chronically ill and disabled people might be shown a little more empathy and understanding for having to go through this every day. There are so many ways you can show that you care about someone that’s housebound (either through self-isolation or chronic illness/disability), but just a few suggestions are:

·      Keep in touch with that loved one who is too ill to leave the house – send them a text, give them a call or, if they’re not contagious and feel up to it, ask if they would like a visitor
·      Ask someone if they need any shopping doing
·      Offer to pick up someone’s prescriptions for them
·      If you’re an employer, rather than discounting someone with a chronic illness or disability for a job, look at ways they could work remotely
·      Offer to lend them a book/game/DVD etc. to keep them entertained
·      If they can’t go clothes shopping but you’re going, why not take videos/pictures or even Face Time them while you’re out so they can shop through you
·      If someone has to cancel at the last minute because they’re not well enough, don’t get angry with them and understand how upset they will be as well

Seven days of isolation may seem a long time, but in the grand scheme of things it will fly by. If you’re not feeling too ill, why not use it as an opportunity to do all those jobs around the house you haven’t had time to do? Or have a movie marathon/binge-watch all those Netflix shows you’ve been waiting to watch. For the majority, before long, they will be back out of the house and those seven days will just be a memory. All I, and the chronic illness community, ask, is that you please remember those who can’t get back out there after seven days. The tweet above from Miranda Hart sums this all up really well.

Do you have experiencing of being housebound for a long period of time? Are you hoping more people might start to understand what it’s like for the disabled/chronically ill? 

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