The impact of Covid-19
“I feel forgotten” Chronic illness and the impact of covid-19
In April 2020, the Women and Equalities Committee put out a call for evidence about the impact of coronavirus (COVID-19) on people with protected characteristics. We submitted evidence based on the findings from a survey of over 700 people in which we asked about the impact of coronavirus and associated policies on disabled people living with chronic illness.
Click the image below to download a copy of our evidence submission.
Disability Wales Blog
What does covid-19 mean for the chronic illness community? The covid-19 crisis has us all in shock. But it has also shone a light on our social exclusion as a group of disabled people, as well as our hopes for inclusion. A blog by Catherine Hale.
Housebound – a guide to self-isolation
If this is your first time having to live almost entirely in your home, it’s going to be difficult to adapt – but there are things you can do to help, writes Victoria Clutton
I’m a chronically ill person who has lived alone and been mostly housebound for the last 24 years.
It’s not easy.
I’m hoping this guide helps you deal with the emotional impact of social distancing and spending more time at home.
This guide is structured around five issues you’re likely to run into, with strategies for dealing with each. These are:
- Issue 1: lack of structure
- Issue 2: extra negative emotions
- Issue 3: isolation and quiet
- Issue 4: feeling trapped or claustrophobic
- Issue 5: feeling stuck or purposeless
As a general point, while I expect there will be a high demand for therapists during the novel coronavirus pandemic, online therapy is an available service worth considering if you feel it would be helpful for you.
Issue 1: lack of structure
Many of you probably work, go to university or school, or have tasks and social activities that structure your day. Some or all of these things may not be possible for you right now, leaving you with amorphous blobs of time. It’s important to impose some structure on that time to avoid feeling lost, aimless or depressed.
- Have a sleep schedule. Keep setting your alarm even if you don’t have to, though you can definitely set it an hour or two later if you want.
- Have regular meal times.
- Make sure you wash, shower and dress every day, even if you live alone. A day in PJs every now and then is fun! Living your life unwashed and in PJs can make it easy for you to let other daily routines slide.
- Find substitutes for rituals from your normal life. Do you love your morning Starbucks coffee? Make yourself a really nice cup of coffee in the morning: drink it from your favourite mug, or even buy some nice beans and grind them yourself. Do you have an exercise class you love? Do a version of it at home: YouTube has a ton of free exercise videos. Do you meditate or have some kind of spiritual practice? Keep doing it!
- Create new rituals. One of the consolation prizes for being housebound is that you have more time in your day now, and one of the best things you can do for yourself is make the most of it: spend that time intentionally rather than letting it slip by. If you have a habit you’ve wanted to start but not quite had time for, now is the time to start (unless it’s something that will add to your stress). Do yoga, pamper yourself, read a book for an hour each night, lift weights, have a bath with your favourite scented candles – whatever gives you a sense of purpose or happiness.
Issue 2: extra negative emotions
You may find that you become upset, irritated and frustrated more easily than normal. Being aware that this may happen is the first step to managing it.
- Remove physical irritants from your home. If you’re a person who likes things to be neat, make sure your surroundings are neat and clean. If you’re a person who feels comforted when surrounded by all of your stuff, you could get some variety by switching up what you have on display. If you can fix that wobbly shelf or squeaky door, do it. Is there a messy corner or over-stuffed kitchen cupboard that makes it a pain to get your pans out to cook? Re-organise it. Funky smell somewhere, sort it out. It may sound insignificant but these small irritants are a drain on your mental wellbeing that really add up. If you make sure your environment is irritating you as little as possible, you’re less likely to argue with a family member or break down crying over something small.
- Do small things that make you happy. Even – perhaps especially – if they’re “silly” or “unimportant” things or things you can’t do outside. If you have clothes that cheer you up, wear them. If you have a favourite scented candle, light it. Put your favourite bedding on your bed, dye your hair blue, allow yourself little treats or indulgences you wouldn’t normally have.
- Set aside specific times to read the news. Obsessively following the news can increase feelings of fear and anxiety. It’s not productive to refresh your favourite news site once an hour; you’re just keeping the virus at the top of your mind all day. Try and keep it to once or twice a day.Use social media responsibly. Social media is a double-edged sword at a time like this. Your feeds can be a great source of companionship, solidarity and information – or they can be an assault of anxiety. My biggest tip is to pay attention to how you feel during and after you’re using social media and adjust accordingly. It’s important to take care of your mental health, and if social media use is compromising that, you need to be doing it less.
- Communicate with the people in your shared living space. Whether you’re living with family, a partner or friends, you are likely to be with each other more than you’re used to, which may well lead to irritation with each other. Be aware of your feelings and needs and communicate with the people sharing your living space. Try and see this as an opportunity to practise your communication skills and emotional intelligence. Adversity can strengthen relationships if everyone approaches the situation with compassion and honesty.
Issue 3: isolation and quiet
If your normal life involves going out and seeing lots of people, then you’re used to a level of human interaction and bustle that you won’t have access to right now. That can be tough, but technology has a huge range of ways to help you overcome this.
- Socialise on the internet. You can use WhatsApp, Skype, Discord, or Zoom (online meeting software) to socialise in a bunch of different ways. Play online games with your friends, have a virtual cocktail party, organise a watch party (you all watch something in sync), do a poetry reading, act out a play with a group of friends, just sit and chat, start an online book club. Be creative! For almost anything you can do in person, you can find a way to recreate it online.
- Dive into your music collection. Listen to music you love, discover new artists, make playlists, share them with others. Being in your own home means you get to pick the soundtrack: make the most of it.
- Discover podcasts. If you’re not already a podcast person, now is a great time to check them out. You can find everything from news to satire to true crime to documentaries to audio-dramas to roleplaying games. Whatever you’re into, there’s a podcast for you. You can listen while you’re doing chores, eating meals or doing other hobbies that use your hands but not your brain. If you live alone, conversational podcasts can take the edge off feelings of isolation, especially if you can’t e-socialise as much as you’d like.
- Explore audiobooks. These were a huge game-changer for me. Novels are perfect in this format and, as with podcasts, you can listen while doing other things. Did you know that Stephen Fry narrates his own audiobooks? You do now.
- Get involved in volunteering. People are starting to mobilise and create new types of support networks for vulnerable people. If you feel the need for a sense of purpose as well as social contact, there are ways you can volunteer from your home that will have a huge impact on others. There is a section in the Coronavirus Tech Handbook that covers current volunteering options.
Issue 4: feeling trapped or claustrophobic
I cannot emphasise enough how much even quite small details of your environment matter when you are housebound. We have the term ‘stir crazy’ for a reason, but there are actions you can take to reduce feelings of confinement.
- Sort out your living space. You can’t increase the size of your home, but you can use the space you do have well. Do you have unused space in your home? A room you can’t use because it’s too full? Or a room you don’t like to use because it’s messy? Now is a good time to clean those out and reclaim that space.
- Use all the space that you have. Designate different areas of your home for different activities if you can. It may sound small, but I find that changing positions in my home throughout the day really helps.
- Get out of the house. At the moment we’re still okay to go outside. Do that. If you’re sharing your living space, consider having a schedule for going out at different times: this will give each of you some alone time to look forward to. Make the most of your garden or balcony if you have one; even opening windows is better than nothing.
- Get a better view. Can you move your furniture around so that you see more of the outside from your workspace or sofa? If your windows are dirty or obscured, clean them and remove anything blocking your light. Being able to see outside is calming and helps give you a sense of space. Indoor potted plants can help with this too. If you have them, make sure they’re where you are going to see them.
- Make some private space. If you’re sharing a living space and you have the room, give each person a dedicated private space or set aside a shared space to go for alone time.
- Embrace home improvements. Are there any improvements you can make to your environment, however small? You could finish decorating a room, hang up some art or get some new cushion covers. At the moment we can still order things online, and it’s not a bad time to spruce up your home a little if you have that capacity.
Issue 5: feeling stuck or purposeless
One of the things I have found difficult about isolation is feeling purposeless and stuck. Isolation means your world becomes very still, and it can be hard to see how you’re contributing to the world in a meaningful way. One of the few good things about being housebound is that you generally have more time than most people do, and you can use that time to do lovely things for yourself and others.
- Volunteer. I mentioned this earlier, but even if you’re stuck at home there are things you can be doing right now to help people and make a huge difference. For example, I’m writing this guide! The Coronavirus Tech Handbook has a section on volunteering that I’m sure will be expanding as people find new ways to contribute. You can also drop a letter with your contact details through the mailbox of an elderly or at-risk neighbour asking if there is anything you can do to help. You are not helpless. There are things you can do that will really matter to others and seeing yourself make that difference will help with your own mental health.
- Learn a new skill or develop an existing one. Do you have something you’ve always wanted to study or learn how to do? This is your chance. Several years ago, I taught myself to knit entirely from YouTube. I’m currently making my third lace wedding shawl, something I offer to do whenever a close friend gets married. The internet has books and videos that can teach you how to do almost anything you might want to learn: from relevant work skills to silly, fun skills. Take a class in massage therapy, learn to build your own PC, learn a new language – whatever you want. Picking up skills is (almost) never a waste of time.
- Have projects. This can be anything: home DIY, organising a cupboard, eating healthily, exercising or learning a new skill. Mini-projects are great and, in fact, if you have a grand sweeping project in mind, splitting it into a succession of mini-projects is a brilliant idea. Tracking your progress towards a measurable goal is a way to remind yourself that you are achieving something. The shiny ding of achievement you get from completing a project or accomplishing a goal really helps with that sense of purpose and stops you feeling stuck and static.
- Get creative. Creative hobbies are particularly wonderful – indulge them if you already have them, consider developing them if you don’t. The important thing here is that the hobby involves building, making or crafting something. You get to see yourself making progress to a well-defined goal and you get physical proof that you did something useful with your time as the end result. For me, this ticks a lot of the boxes for avoiding feeling stuck or purposeless.
Victoria is an Advisory Group member for the CIIP. She has had ME for 20 years and has recently graduated with a Maths and Computer Science degree from the Open University. She is currently juggling her health, her first job and as much activism as she has the spoons for.