Chronically Ill and Uncomfortable with the Easing of Lockdown

Thin white woman sits in a wheelchair in the countryside. She has smiley faces on her wheel covers.

Today I’ll be sharing my thoughts as a disabled person, experienced in social isolation long before this current pandemic.

I’m vulnerable.

Initially I wasn’t classified as “very increased risk” shielding-category-vulnerable. Then I received a letter in late May -dated April- advising me to shield. I’m still confused by this as my condition is supposed to put me in the middle (“increased risk”) category. People like me weren’t supposed to receive letters, and my mother was unable to take time off from her part time work (outside of the home) as it would’ve been unpaid. (Only those in the higher category were supported with fully-paid wages for anyone in their household). Another letter I opened in late June (with the more appropriate date of June 22nd) confirmed I’d been identified as someone at very increased risk and updating me on new shielding guidelines. Which is more than a little late for someone who’s mum continued to work one day a week in a supermarket throughout the “peak” time. I can’t help but wonder who else had this confusion, especially anyone with family members in key roles, working more hours out of the house and at risk than my mum has been.

Photo of soft sunlight on yellow flowers.

So, why am I “uncomfortable” with things being relaxed?

Panic stations, I can deal with. Isolation, I can manage. Threats to health, missing friends, arguing with authorities; these factors set the scene for most of my childhood. If anything, recent months have made my usual lifestyle feel more… “Normal”, in among everyone else spending so much time at home. But what about when friends start asking if I can join them again? What about when my music group meets up, when the Zoom calls stop but my vulnerable status remains? The decisions will pile up. Go out? Social distance? Mask? There will be government advice but, judging by past actions, they don’t air on the side of caution and often change their minds. When you’re more at risk, decisions made by others aren’t so easily transferable. I can’t let my guard down and go with the possibly-socially-distanced crowd. Whatever stage non-disabled, low risk people are at, I’m likely to be a few rolls of my wheels behind. Or a lot of steps, if I’m still at home where I don’t use my wheelchair!

Photograph of Sakara (a thin white woman with medium length brown hair) using a wheelchair with smiley face wheel covers. She's sitting on a rural path lined with white cow parsley flowers. The sun is gentle. She wears a mask, flowing lilac shirt and green trousers.

I have no idea when I’ll feel safe to pursue things like singing again. It’s hard enough for non-vulnerable performers right now.

I’m aware this post is all about me. It’s because that’s what I know. There are plenty with more worries than I’m listing here. I have my parents to care for me, I trust them to take the kind of care I would at any time when they leave our home for work or supplies. I don’t have the same fear of those with limited care options, or without a safe place to live.

This Guardian article is pretty old now, posted in late March. But it talks about those fears over accessing care. (I must warn you I did find parts of it upsetting).

Kate Stanforth is a model, dancer and disability blogger who is shielding as a member of the very increased risk group (though I’m not sure if she is still on that list as the criteria were changed). She’s shared her feelings about this situation more than once on Instagram, including with in this post written by her friend (who has a private account):

View this post on Instagram

???? Sharing a post that my incredible friend, @naomi_barrow made, alongside this graphic. So lucky to have people like you in my life ???? As people begin to ease up on lockdown, please remember that there are so so many people who can’t. This includes (but isn’t limited to): – those shielding. – those with severe anxiety and/or OCD. – those who rely on carers to go out and can’t currently access enough carers to support that. – those who were already stuck inside due to illness or something else. -those who live with someone who’s shielding. – those in a family of six (or more)who technically still can’t see other family members without taking it in turns. – those who are so worn down and tired that they don’t have the energy to get out. – those in hospital. – those paralysed by grief. For whom leaving the house would bring it too close to home. There will be many more reasons why people can’t go out. But that’s a start. So what can you do? – check in on them. Drop them a message now and again. Don’t let them be forgotten. – share things with you that remind you of them. Don’t let them feel forgotten. – ask them if they’d like a video tour of your garden. Or to go on a video walk with you. – share the heck out of their work if they’re publishing blogs/art/videos/articles/etc. – write to your MP about lack of provision for them. – all of those things that have helped make life more accessible during lockdown? Don’t just abandon them. Don’t let disabled people become invisible again. – be an advocate. Be an ally. – ask if there’s anything you can do. Do not let these people be forgotten. It’s really flippin’ awful to see the world carry on without you in general. But so much harder when we were supposedly ‘all in this together’ and now we’ve been ‘discarded’ again. When the government doesn’t even value shielders enough to mention them in their daily briefings. This is on us, now. It’s on us to stop people from being abandoned. It’s on us to share their stories, amplify their voices, and keep them involved. Do not let people be forgotten. #isolation #covid19 #campaigning #theymatter #imatter #iamthevulnerable #dontforgetme #shielding

A post shared by Kate Stanforth (@katestanforth) on May 30, 2020 at 2:45am PDT

And more recently with this post of her own:

View this post on Instagram

Remember how you felt during lockdown. Remember the anxiety, the uncertainty, the isolation. This is our lives. As shielding comes to an end, it’s the start of a new path for many people. It’s been a difficult few months and it’s fair to say, the next few could be equally as challenging. I wanted to write a few quick notes on what it’s like to come out of lockdown as a ‘shielder’ / ‘vulnerable’ / disabled person. Let me know your thoughts. Feel free to share, as always ???? X #shielding #covid19 #highriskcovid19 #chronicillness #vulnerable #dontforgetme

A post shared by Kate Stanforth (@katestanforth) on Jun 24, 2020 at 8:13am PDT

Bringing back memories…

I’m also concerned for memories this situation will be triggering for people who’ve experienced social isolation on their own before. The phrasing of “social isolation on their own,” feels wrong but I mean it in that, at the moment, this is wide-spread isolation in a way that feels far less… Isolating. I mean that it’s harder when it’s you, on your own, dropping out of a world that seems to be continuing without you in it. The first time I left our garden (after a month of lockdown) I looked across the fields and cried. Not for right now, but for the memories of all the other times I’ve forgotten how big the sky is, or how tree branches seem to move in relation to one another as you pass beneath them. Three (3) dimensional things that I would only see in photographs for weeks or months at a time when I was younger.

[ID: Above is a gallery with various photos of soft white and yellow flowers in late spring sunshine]

Pippa Stacey (a chronically ill writer and blogger) created this post about the non-disabled lockdown experience not being comparable to chronic conditions:

View this post on Instagram

[#AD] In my latest piece for @careco_mobility, I wanted to discuss the true isolation of ME/CFS. ⠀ ⠀ With May being ME/CFS Awareness Month, the coming few weeks are typically full of moving advocacy from the chronic illness population. We as patients typically urge non-disabled people to try and put themselves in our shoes, refute the stigma that still sadly exists, and consider how they themselves would cope with the isolation this condition all too often brings.⠀ ⠀ This year, however, we seem to have got more than we bargained for…⠀ ⠀ For the first time, the general public are experiencing a small but significant glimpse into what it’s like to be confined to their homes. Buuuut, as somebody with ME/CFS who has been sitting back and calmly watching the country scramble to adapt, it occurred to me that there are still these mammoth differences in our perceptions of what it means to be isolated… both physically, and psychologically. ⠀ ⠀ I hope this piece goes some way in showing that even if lockdown offers a tiny glimpse into life with chronic illness, and that could go such a long way, what non-disabled people are experiencing is far from a true reflection of the less visible isolation and trauma of ME/CFS… and other invisible conditions too.⠀ ⠀ Link to the full piece is in my bio, and I’d love to hear your thoughts on this one. Hope today’s being as kind as possible to you! ????????

A post shared by Pippa Stacey (@lifeofpippa) on May 4, 2020 at 11:00am PDT

I’m scared other people will try to empathise and misjudge it.

I was writing songs about missing seeing my friends blink, forgetting the true proportions of their features, and just… Being alone, a long time ago. I’m scared people will think they “get it” now. Use this experience to increase your empathy, sure. But not by assuming you know it all. It’s hard to imagine me saying this to anybody’s face as I know they would be well meaning but… Use this experience to get uncomfortable, use it to educate yourself on the experiences of others and admit that you haven’t experienced it all, none of us know it all. And nobody expects you to. I find it uncomfortable to admit I have a lot to learn, but I know that I do. I want people to listen to each other, to allow space for people who’ve previously been pushed aside to speak. Listen, don’t talk over us while joyously declaring how much you “get it now”.

Will I be left behind again?

Combining the memories of the past with a fear that people won’t understand gives me an idea of what the next few months will feel like. I don’t know how I’m going to react to feeling others shift back to “normal” while spending most days in the house remains my normal, even beyond the days of virus related dangers. The first day I heard children returning to a school nearby brought this thought to mind because it hurt. Because it reminded me of everything I’ve missed and am set to continue missing long after this year is over.

I won’t be the same as I was before.

Partly because I’m 19, and in the process of growing up. I had to change. Before all this came about I was at a point where my life didn’t make sense any more. Things would’ve shifted a lot for me over the last few months, with or without a global pandemic. Before this, I hugged less than I used to. I’d identified it as an anxiety response, left over from the time when I had months between visits from friends. I didn’t need to hold onto everyone, to every moment, any more. Talk on the news about the mental health effects of adjusting after lockdown make me realise I’ve been through that already. Back when I first joined my music group after years of solitude.

What if it hurts like it did when I first started socialising again? What if my existing cognitive symptoms are worsened by groups of people and overwhelm I’ve got used to not dealing with recently? Then again, what if it’s okay? After a while. Maybe I’ll be more me than ever, after this time deciding things purely for myself. I don’t know.

So yeah, I’m scared. But so are most of the people I know and love, I’m not really alone in this.

Please wear masks, protect the people around you. Make this world as safe as possible.

Viewing the vulnerable as humans worth protecting shoudn’t feel radical. It is not an overreaction. Wearing a mask is not an overreaction.

Yes, we need to be wary of patterns that increase and maintain social anxiety but also… Covid-19. Anxiety is starting to look pretty rational in particular circumstances. What else can I say? For the foreseeable future, I’m keeping all non-household hugs 100% virtual. No matter what restrictions are eased.

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Clarity ????. We've just heard Mainie's school will not be reopening for her class in June after all. The relief is tangible. We weren't going to send her, (*edited to add: this is because of our pre-existing conditions*) but I thought things were going to get muddier – some of her friends going back, 5yo FOMO. But no, it's just us till September, and it's out of our hands. . Things have shifted. The clarity of the total lockdown has gone. Not for us, not I'm sure for lots of other individual households, but we feel it anyway. . On Thursday we were all still out in the garden at 8pm. We waited for the clapping and it didn't come. Yesterday at around 8 there was a different noise – "BOO FOR BORIS" someone shouted in the street. We are not a Tory area tbf ????. . Hard things are a lot easier to bear if you know what you're in for, in my experience. (Though life rarely gives you that of course.) The ???????? government here seems determined to give us as little clarity as possible. Decisions are shifted onto individuals, onto schools. We'll all argue amongst ourselves, take our eyes off them perhaps… ???? L.C . Wednesday 27th May 2020 8pm Lockdown day 75 Image description: I'm in my wheelchair, in my bedroom. I'm looking down and am mid-wheel. I'm wearing no make-up, a long white cotton petticoat and a cardigan – truth be told these are my pyjamas. Yes, I sleep in wool. . . . . . #reluctantlyhomeschooling #booforboris #motherswithwheelchairs #storiesoftheeveryday #babewithamobilityaid #hashtagauthentic #picturinglockdown #isolationportraits #lifeinlockdown #disabledparents #lockdownlife #naturaltones #oxford #disability #honestlyparents #naturalfabric #dearestviewfinder #disabledmum #parenthood_moments #freezeamoment1#theeverydayportrait #quarantineliving #dfpcommunity #lockdownuk #momtogcommunity #igersoxford #parentingtheshitoutoflife #schoolsoutforcorona #thedocumentarymovement

A post shared by Lucy & James Catchpole (@thecatchpoles) on May 27, 2020 at 12:00pm PDT

I particularly related to the phrase “the clarity of total lockdown has gone,” in the above post. I think it summarises the reason any easing of restrictions has made me uneasy.

Disability blogger Chloe Tear wrote a similar post to this. If I’d seen hers before finishing this draft I probably would’ve chosen to share it instead of writing my own! She covers many of the same points I did but also offers a different perspective as somebody who is partially sighted: Click here to view her post (As A Disabled Person, I’m Not Ready for Lockdown to End)

I’ll be here next week with a more light-hearted post. So do check back for that. In the meantime, I’ve added this site to Bloglovin’ and you can follow it by clicking here.

Until then,

-Sakara.

P.S. It was sweet to spot those who are not required to social distance enjoying each other’s company! [Photo above (top right of the small gallery) One pigeon grooming another while sitting in a tree]