Lockdown for COVID-19 & for People with Chronic Illness
The lockdown laws for the COVID-19 pandemic vary for different countries and states, but people with chronic illness live a life in lockdown of sorts on a daily basis.
Parts of Europe are set to go back into full lockdown again at the time of publishing this post. Here in Singapore, we’re allowed to gather outside in up to groups of five. The chairs, benches and any place where people queue have all been marked with red tape (yes I know, the unintended pun) for proper social distancing. Masks are compulsory by law, which I’m grateful for. There are a bunch of other strange rules which I won’t go into detail here (like no airing of live sports in bars).
Many healthy people are resuming a semi-semblance of normality here, where they can go out for a drink, meet their friends for a while, and do some shopping with a bit of caution. For people with chronic illness or a disability however, not much has changed, and many of us worry that we’ll be forgotten again once the lockdown is finally lifted (when?).
Will Accessibility Degrade Again After the Lockdown?
Will all the accessibility features and accommodations within society and at workplaces degrade again? People will surely forget the frustration of being cooped up at home all day soon enough, right? It’s human instinct built for survival. The fact that people with chronic illness or a disability still need to continue the lockdown life won’t matter anymore, will it?
Sad to say, I think that this will be the case, as humans forget short-term pain or minor inconveniences quickly. Rarely will someone stop to consider the wellbeing of someone beyond that of themselves, and their loved ones. “To each their own.” “It’s none of my business.” “I’m too busy.” “The government will take care of it.” “I don’t know anything about this, so how can I help?” So on and so forth.
Mini Interviews with People with Chronic Illness and/or a Disability
Well I think I’ve rambled on enough, so here’s a list of things that stop people with chronic illness and/or a disability from leaving the house on a regular day, with or without the COVID-19 lockdown in place. These are real life mini interviews, from actual people who live with a chronic illness or disability. You will see that apart from chronic pain, overwhelming fatigue and the accompanying payback down time is a huge deterrent for many.
I hope that this short compilation helps to give you a glimpse of insight into our lockdown world, and that you will take something away from it, mainly empathy 🙂 To those of you who contributed, my apologies for getting this out so late; life has been manic, which you’d probably know about if you were following my monthly entries for the Chronic Illness Linkup Parties. Thank you once again for your support and for speaking up – like I always say, ‘every voice counts’.
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Before the COVID-19 Lockdown, What Stopped You from Leaving the House as a Person with a Chronic Illness and/or a Disability?
“My own introversion haha.”
– Anonymous –
“Crowds.”
– Khai Hoon –
“Pain. Am I going to be able to rest? I look perfectly healthy but I’m in agony, so will I get a seat on the train, will people help me out, will I make it through xyz activity or need to leave early and disappoint people.”
– Ash –
“My health – I’m pretty much bedbound, and have been for seven years now.”
– Jo Moss –
“Migraine pain and dizziness, and feeling faint from dysautonomia.”
– Claire G. –
“Before the quarantine, my life had become very isolated due to chronic pain. Although I was able to work and visit people locally, I couldn’t travel any distance so had not been out to concerts to see friends for a long time. It was quite hard seeing friends post on social media about events that I would have normally attended, but couldn’t.”
– Jo Jackson –
“I have very low immunity, thus any virus going around my community is a threat and thus, forces me into isolation. Currently in my fifth week [at time of submitting this entry] of isolation because of COVID19.”
– Karen Taylor –
“Pain; I’ll think how daunting it is to simply get cleaned up and dressed knowing how I’ll feel afterwards. I used to push myself and do it anyway. Now I’m realizing it takes too much energy out of me, magnifying my pain and other symptoms.”
– Susan C Smith –
“Fibromyalgia (FM) issues: fatigue, brain fog and pain – in that order.”
– Katie Clark –
“Pain and fatigue, though most of the time I can work through it, which is a beautiful thing. This pandemic is certainly giving me some space to get enough rest.”
– Emmie Arnold –
“Even when it’s not recemmended we stay at home, I don’t always leave the house because I enjoy being at my home. I have created a safe, loving space that is very inviting and I enjoy being in.”
– Jennifer Brightbill, FNTP, CEOC –
“PAIN is the #1 thing that stops me from leaving the house. Things such as the harsh weather like rain, wind, and humidity increase my pain tremendously. I’m also often restricted to my house due to operations. Since the age of 18 it has become my norm to have a surgery every 1 to 1.5 years, so being home bound is not new to me.”
– Nina T Torres –
“Fatigue.”
– Jen Johansson –
“Chronic physical ailment and mental health issues.”
– Emilee Kendell, A Mercurial Consciousness –
“Usually I have enough energy to go downstairs to get my coffee. Energy is a huge problem. It is always a deterrent for leaving the house. Sometimes I can push through things, but that always makes me sick, so I try to manage what I leave for.”
– Carrie Kellenberger –
“Chronic migraines, stoma problems, chronic pain from nerve damage and fibromyalgia, chronic fatigue.”
– Caz / InvisiblyMe –
“Severe, life-threatening reactions from a condition called mast cell activation syndrome. I have reactions to perfumes, colognes, strong laundry detergents, smoke, chemical cleaners, airborne foods, and more. These triggers are often found in public. In order to keep myself safe and reduce the need for emergency epinephrine, I can only go to places that are ‘safe.’ When I do go out, I wear a filtered mask.”
– Cheyanne Perry –
“Bedridden most days, leaving home only for medical appointments.”
– Terry Mayfield –
“The knowledge that I would be embarrassed at a meal that I either do not order food, I do not eat the food I order or the unpleasant sight of how I see myself with this disease.”
– Kevin B –
“Migraines and back pain.”
– Ernestine Coleman-Dupree (Virgina Nymph) –
theviginianymph.wordpress.com
“Fatigue related to my chronic disease. Sometimes I just need to hang out on the couch or in bed all day and my body thanks me for it.”
– Sarah Poitras –
“What stops me from leaving the house on a normal day are plans I have made with my family. For example, if my husband and I have a Disneyland date planned for Saturday, I will conserve my energy prior to it.”
– Cynthia Covert –
“Fear of getting Covid-19 due to my poor immune system. Any of my family becoming a statistic.”
– Jaime Smith –
“My body keeps a debt score just because I leave the house, whether it’s for a medical appointment, work or pleasure. The thing about being in a public space is not just about the energy spent physically, as chronic pain and fatigue has a compounding effect. It also drains you mentally and emotionally when you need to pay attention to your surroundings and communicate with people.”
– Sheryl Chan –
Thank you to everyone who contributed to this roundup! Submissions are still open; click here to fill in the form and I’ll add your opinion to this list if it’s relevant 🙂
Note: The article is based on each individual’s own experiences, and nothing should be taken as medical advice. Always be sure to check with your doctor before you start on any new treatment or protocol.
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This is such a great roundup. Thank you for raising awareness of the many challenges that come with leaving the house for those of us with chronic illness. Hopefully posts like this will keep healthy people thinking about how lockdown will continue to impact us even after COVID.
Thanks Cassie, the community gave some really great feedback and collective insight, which I enjoy compiling to see the patterns. You can probably see that so many of us have the same restrictions in some sense, even though our disorders vary so widely!
The comments and similarities here are not surprising at all, yet when you see them all together, it really hits home again how disabling and hard life with chronic illness is. You’ve done a terrific job with this round-up, Sheryl. I always look forward to seeing these posts and reading what others have to say!
Thank you Carrie. Me too, it’s always interesting insight to have so many different perspectives (and also discovering that we all struggle with similar things!).
Thank you for bring understanding and awareness by including so many voices. My hope, am I naive, that some of the things put into place to help the larger community during this Pandemic will remain because they are helpful for Spoonies and doable because they are already place.
Not naive at all 🙂 Hope is a good thing and the impossible is made possible by people like you 🙂 I too hope that there is some good within society out of all this pandemic horror!
This is such an important post Sheryl to raise awareness of how the lives of so many of us haven’t changed, and won’t change post any lockdown or covid virus. Thanks so much for writing this and sharing the voices of so many from our community.
Thank you Sam. I love when the community all adds in their slice of perspective. I love the different thoughts that come together and find it interesting. It all adds to paint a bigger, better, more accurate picture of the truth (whatever that means in chronic pain!).
Great post. I’m definitely concerned on losing accessibility after lockdown, it’s really helped a lot of disabled people that were denied accessibility previously.
Hi Shelley, yes the accessibility has been great during lockdown. I loved taking lessons online. Usually commute times are the killer for me anywhere.
My goodness, it’s incredibly hard-hitting when you see so many reasons one after the other like this. I’ve been incredibly angry of late with governments and many of the selfishly ignorant people defying lockdowns and moaning about how the ‘weak and old’ should be locked up & forgotten about so the rest of the population can live their lives. A large number of people are already the ‘forgotten’. Our lives have already been impinged because of our health in some way, but we don’t get a second thought. You’ve done an absolutely fantastic job at putting all of these together, Sheryl. A hugely poignant collection from some of the most badass, honest & awesome people out there. xx
Hi Caz, yes it is, isn’t it? So many of us struggle with the same things though our diseases differ. And the lockdown has indeed highlighted the divide and need for more awareness.
From talking with friends on Instagram I’ve definitely found that we seem to find lockdown easier, as we are used to be being home more. I love being out and about in London but my fatigue gets worse, headache and migraine attacks, sore joints etc etc. My body has almost enjoyed this enforced rest.
Hi Claire, agreed! Lockdown life for us is pretty much business as usual. It’s taken a hit on my mental health though just like anyone else, although not from my usual routines, but more of others at home too, which interferes it hehe.