Covid-19 And The Chronically Ill Disabled Community
Not another Corona post eh? We’re either frantically searching for the latest updates or trying to switch off for a brief pause in a bid to lessen anxiety. It’s a difficult balance to achieve; gathering reliable information and staying in control of one’s environment, as much as is possible.
The Novel CoronaVirus came, it appeared through our news channels and began taking a hold of our attention. Then suddenly it seemingly took hold for good. As our schools closed, bars and restaurants followed, the country went into lockdown, and we as a nation and as a world halted.
This is of course not new information to anyone but goodness, are we scared. And I want to reiterate that, suddenly, everyone is scared. This is all encompassing. This is affecting our livelihoods, our work, education, homes, family, friends, health care and health. This is everything.
New Rules, New Way Of Life
In order to survive, we have to follow rules. Stay indoors. Become ‘housebound’. Limit external activity to essential shopping and exercise.
Imagine being healthy and having all of these restrictions placed upon you. Crikey. Well actually, I can totally imagine (and some). It happened to me. I still to this day remember how awful that loss of freedom was and how scary things became coupled with it the emotional burden and financial stress when I lost everything.
This is the issue many in the chronically ill and disabled community are facing. You see, I get it, we get it. Out of nowhere you, healthy people, abled-bodied folks have suddenly lost your freedom. You are facing enormous financial stress. Great worry in terms of childcare. There is worry and anxiety placed upon your health and that of your loved ones daily. We get it. I am sorry, and goodness do I empathise and hate this situation we all face together. Because we do face this together.
Just please rewind a little bit. Many of us in the chronically ill and disabled community have suffered this tenfold. Speaking from my own experience, I have lost my carer twice, facing certain financial instability. I lost the ability to pay for the roof over my head. I face isolation daily, being both house bound and bed bound and I have lost most social contact and that is increasingly lonely when the world carries on as normal. I lost my health. I suffered for 20 years and no government cared. This is not just my story, this is the story of millions like me.
Overnight The World Became More Accessible
It has been a true struggle to watch things unfold during this crisis. On one hand, the technology we rely on to keep us in touch has been the thing that has caused much grief as I witness the world become readily accessible for the many when it has been very inaccessible for those who have needed it for so very long. When those with chronic illness and disability have asked for changes in the way courses are taught so they might continue their education at universities and colleges it has been deemed as too difficult, however now it affects a numbered abled population these changes are readily and easily made.
Many in our community have lost jobs because they have not been offered accessible, work from home support, yet again, when this becomes a problem that affects the many, abled population, how easily companies are able to provide such tech.
We as humans just aren’t that great. I see healthy, able people booking food deliveries, meaning vulnerable people have to go to the supermarkets. All the while disabled, housebound, severely ill folk who have relied on food delivers for many years simply cannot get access to food to their homes, and yes, I know we are all scared but where is human kindness?
Over the years I have lost count of the times I have been told how ‘lucky‘ I am because I ‘get to stay at home‘ all the time. How much others ‘wished they had more time’. It has always been like a dagger through my heart. On one hand, I try to tell myself that they are simply busy and wishing to be able to do more, on another, I am devasted by the ignorance of people I hoped understood more. I do not ‘get to stay home’, I am forced. This does not make me ‘lucky‘. I spend the majority of my time in bed. I am severely sick. Always. I can spend months upon months without leaving my home. That is being house bound. So now, to hear healthy people moan constantly about how bored they are being ‘isolated’ and stuck in the house when they are still working, from home, can still go out to exercise, are catching up on odd jobs around the home, well it’s a little too much to bear. And yet I get it. Freedom has been taken away. I live it and therefore I empathise. I just wish the same empathy could perhaps be offered in my direction and to those in my community.
Economics, Welfare, Finance
Suddenly everything matters. As the government scrambles to attempt to support the country, employers announced sick pay and our news feeds filled with complaints of how people were expected to live off that. The level of sick pay is still more than some who are chronically sick and disabled receive, some get none. The same amount of money that is expected to cover all bills, keep roofs over head. The same people who have only asked for accessible jobs. Think about that. Again, this is not to take away from the struggles anyone and everyone is facing. Simply to point out the struggles a huge portion of society have faced all along with little fight for our cause. Figures show that “more than 17,000 sick and disabled people have died while waiting for welfare benefits” and that ministers are accused of “failing people at the most vulnerable point in their lives”. I just hope, that now when a great many number of people fall vulnerable in our society and rely on welfare, they face better support.
Many of us in the chronically ill and disabled community have been strong supporters of the NHS and have spoken out about how the government cuts have been devastating, all the while for many with my illness, receiving subpar treatment. While often conflicted, I am vastly aware of the good of the NHS, the necessity of the NHS and the need for it and it’s employers to be supported and funded adequately. My own story, with it’s many let downs does not negate that. Right now, collectively, across the globe we are aware of how incredible our medical staff are. How they continue to work in the most heinous conditions, undersupported, completely overwhelmed by this pandemic. We couldn’t be more grateful, more thankful.
For those who are chronically ill and disabled, those who rely on care there is another issue. Suddenly we are receiving letter after letter with health care appointment cancelations. While this is completely understandable, we are of course in a pandemic – all non-essential appointments are canceled – this has a major bearing on our lives. Lives that often depend on this care. Our health is massively impacted by this. I’m not for one second advocating for any change in this right now, however perhaps noting the impact a simple check in to the person you know who lives with chronic illness might have. As over night their care system has disolved, they have lost any, perhaps all treatment and support available. Medications are increasingly difficult, if not impossible to get ahold of as are appointments with GP’s. And yes, while all completely understandable in this situation, these are all necessities to keep us alive, living, surviving. This impact is huge. As is of course, human kindness.
Finding Our Feet In This New World
My meaning of this post is not one of insensitivity to those suffering Covid-19, loss or to take away from those working tirelessly at the front line. My heart breaks for all in these situations.
Take a moment to understand another’s life, another’s stand-point.
Very insightful Amy, you have made your point without making those of us who usually enjoy more freedoms without thought, question our privilege.
Thanks Aunty Sheron, difficult times! Stay safe! X
You write so beautifully about these issues!
It did occur to me, stuck at home so much, that this is your life- with the added complication of your illness! At least we are fit and well, so far.
You really do have a gift for writing- keep on keeping on!
Thanks so much Aunty Roma, Stay safe all of you!! xx
ME/CFS has “Stolen” my life on so many levels. I am not the wife, mother, mother in law, grandmother, sister, auntie, friend etc that I had hoped to be but I am so fortunate.
No benefits but a husband who has been able to provide for us. I am richly blessed in so many ways but I am aware that that is definitely not the experience of thousands of chronic illness sufferers.
I am a member of a great local community and a caring church. We definitely don’t have all the answers and we do make mistakes, letting people down. However, this dreadful crisis is teaching us all new ways to be aware of the suffering of others and is prompting incredible acts of self sacrifice and generosity of time, talents and financial gifts.
Let us not let the lessons we’re learning go to waste as we, eventually, see our nation and our world recovering from this appalling disease.
Let us hang onto awareness of others circumstances; let us continue to empathise and ACT. Chronic suffering will still exist so let’s Re-assess our priorities for the future.
Thank you for such a compassionate comment. Your words are certainly what the world needs right now. Stay safe!
Well said, Amy! I’ve felt like shouting this from the rooftops from the beginning, but you’ve put my thoughts into words precisely.
I wish people who haven’t experienced decades with ME would hear this message.
Me too! Here’s hoping for a more understanding society in the future!
Brought me to tears. Speaking my truth. Compassion is scarce in good times. I do not expect it to increase in global crisis for those chronically marginalized by illness. They have caught up to us, but with more resources, not having lived through the chronic trauma of cumulative loss that is this illness — for four decades, in my case.
sadly I agree! I just live in hope. I’m so sorry that it has been four decades for you, I simply cannot imagine. It’s been two decades for me, I’m so sorry for your suffering. Here with you!
Thank you for featuring my post on your site!
This is an exquisitely well written article, btw. I shared with all those who know or knew me. Thank you.
thank you so very much!!