Why Many Chronically Ill & Disabled People Feel Let Down By Society Right Now -Covid-19

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.

Loss

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.

Cover-19 "All this talk of telemedicine, telecommuting, tele learning. It's as though ABLE-BODIE PEOPLE LOVE ACCESSIBILITY. - Jen Brea
Jennifer Brea

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?

 

Cover-19 " A request: If you are able to get your own groceries, couled you skip the grocery delivery right now? Some disabled folks rely on it and the sudden surge in demand is leaving them without food."
Julie Rehmeyer
Isolation

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.

 

'Reading other healthy people tweets about cover-19 regarding grief and about not being able to do random event reminds me how resilient us chronically ill are
Ben H
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.

 

"You've been expecting disable and unemployed people to live on this for years." -Frances Ryan
Dr Frances Ryan
Healthcare

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.

Covid-19 "After Coronavirus has passed i'd like all you healthy people to remember that the government made it 'quicker and easier' to access benefits for you, so that when the inevitably keep on denying them to disabled people, you understand that it's a choice they make because they can
Laura Elliott
Finding Our Feet In This New World
Let’s not forget for a moment that this quite simply is a terrifying, unprecedented situation. We have a shared experience of anxiety, fear, of the unknown. I’m sure many can relate to the brief moment when you first wake and it feels ‘normal’ then the weight looms down upon you again, that it quite simply is not. That things have changed drastically, irreparably.
This is something we can, at least, find the tiniest, smallest bit of comfort in knowing that we as humanity are enduring this together.
"Sometimes it takes the wisdom and resilience of those who have been marginalised for all of us to remember the importance of community and mutual aid." Cover-19. -Barack Obama
Barack Obama

 

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.

It is however, important to take stock at times, and these last few weeks have perhaps shown a need to do more so. To note one’s privilege. Goodness, I think collectively we are doing just that right now.
But in these times, perhaps as well as taking note of the affects this pandemic has and is having on your lives and that of your loved ones, perhaps try to open your hearts and minds and consider the impact on others.
"Adjusting to self isolation is really challenging for everyone. You're allowed to find it difficult and it's ok for it to not be glamorous. Please take what you learn from his to be be more understanding for your chronically ill pals for whom this is a regular occurrence.
Kera Saur

 

Take a moment to understand another’s life, another’s stand-point.

This is bloody scary. I can relate both to that fear and to the fear of losing everything.
I just hope that when we get through this we become a better people. We support each other more. We care. We pick up the pieces of our society and take stock. We support the undersupported. We fight for the healthcare system. We care.

 

It shouldn’t take a pandemic to remind us what human kindness looks like. So let’s be humankind.

 

I hope this helps open minds to our livelihoods, I look forward to reading about how others are affected during these strange, unsettling and different times.

 

Much love to all, stay safe.
I have said this before- this is a time to understand those housebound and severely debilitated by invisible chronic illnesses. There are thousands for whom isolation is their life.
Miranda Hart

 

If you’d like to learn more, here’s a great article ‘COVID-19 Illustrates the Pros of Remote Work‘ by Alaina Leary, Twitter thread on ableism and a pandemic, and book ‘Crippled: Austerity and the Demonization of Disabled People’ by Frances Ryan which are definitely worth spending some isolation time pondering.
I’ve written more about my life in isolation in this post ‘All The Time In The World.

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15 Comments
  1. Very insightful Amy, you have made your point without making those of us who usually enjoy more freedoms without thought, question our privilege.

  2. 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!
    ❤️

  3. Thank you.
    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.

    1. Thank you for such a compassionate comment. Your words are certainly what the world needs right now. Stay safe!

  4. 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.

  5. 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.

    1. 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!

  6. This is an exquisitely well written article, btw. I shared with all those who know or knew me. Thank you.

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