Chronic Illness And Self-Worth In A Global Pandemic

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I don’t need to tell you that for the UK’s general population, day-to-day living has drastically changed. For the first time in a generation, all individuals and households are facing restrictions on their freedom and independence, and at the time of writing, there’s no clear indication as to just how long this will go on for. We’re being exposed to countless stories of not only the victims and key workers of this global pandemic, but of everyday people struggling to go about their work, socialising and everyday life from within the confines of their own four walls.

Meanwhile, over here in casa de Pippa, it’s pretty much been business as usual.

Don’t get me wrong, I can foresee huge threats to my freelance work coming up in the next few months, but generally speaking, my day-to-day living has been relatively unchanged since all of this began. My career has already been designed to be as home-centred as possible to accommodate my health needs, I’ve acclimatised to not seeing other human beings on a regular basis, and over the years I’ve become pretty blummin’ experienced in proactively participating in the world from my bed.

In theory, then, you’d perhaps expect that I’m doing grand at the moment. I’m just as surprised as you might be that this hasn’t quite been the case.

On reflection, there are two main issues that I feel are affecting me, and most likely many other chronically ill people, as a consequence of the UK-lockdown…

The first issue is something I briefly touched upon on Instagram; the somewhat chaotic energy of people’s responses to their confinement. Up and down the country, disabled and non-disabled people alike, many have jumped into action: launching projects and schemes, learning new skills, throwing themselves into work or side hustles, or basically vowing to use this time as some sort of hardcore self-improvement intervention. And, of course, sharing each and every element of these things with the world via the medium of social media.

Often, it can be incredibly motivating to see amazing people doing amazing things. However, the sheer overwhelm and online ‘noise’ of all of these things suddenly being pursued in such a short space of time actually had the opposite effect on me. It made me feel incredibly under pressure to find my own *thing* to be doing, as if that was some sort of obligation in order to stay *relevant* as a blogger and activist in this fast-paced online world… despite knowing first-hand that 1) your achievements and output don’t define your worth, and 2) it’s all about the bigger picture.

Even though I’ve well and truly made my peace with my capabilities as a chronically ill worker and an all-around slower pace of life, I’ve never quite been able to fully shake the insecurity that who I am and the things I do aren’t ‘enough’. So, seeing non-disabled people using this period as something of a novelty, running their daily mile and grafting at their work, has actually been quite a stark reminder of my own limitations. Within days, it was as if the little tricks and routines I’ve developed (and always been pretty proud of) as a chronically ill worker suddenly became insignificant, and in my brain, I felt I was somehow losing at my own game.

Fortunately, I’ve now managed to chill the heck out with this one. Rationally, I know that the social media highlights reel behaviour of our generation, combined with my own insecurities, might be giving me quite a skewed outlook on the situation. And even if other people are doing amazing things, it doesn’t make my own fluffy-socked wobbly steps forward any less significant.

Ironically, taking a deliberate step back from it all these last few weeks has given me insight into the somewhat lower-key things I want to do to show my support and contribute to the effort, without compromising my health, and I’m grateful to have avoided bulldozing headfirst into something primarily out of obligation. If you too are reading this and feeling a little lost in this whirlpool of constant online shenanigans, I hope you know that taking a step back from it all is 100% okay. If anything, I’d recommend it. It’s all about pacing yourself and being conscious of the bigger picture, and looking after your own health and wellbeing is a key part of that.

The second strand, however, continues to affect me, and I have no doubt that I’m not alone with this one.

Over these last few weeks, we’ve seen huge structural and strategic changes made in sectors such as education, employment, the arts and entertainment, and so much more. Businesses, organisations and enterprises have gone above and beyond to adapt their offerings to become more universally accessible, with an incredibly speedy turnaround, ensuring that people’s lives are as undisrupted as possible whilst they’re confined to their homes. Again, this is no doubt a wonderful thing. I’m genuinely glad that we as a society are able to embrace technology, reap the benefits of adaptations like these and keep on moving forward.

The thing that’s getting to me, however, is that it took a global pandemic for the UK to accommodate the very adaptations disabled people have spent years of their lives fighting for.

I cannot begin to express just how much time and valuable energy myself and so many others have spent trying to make the world a more inclusive place. Personally, I’d made my peace with the fact that it would likely take many, many years for the adaptations we were advocating for to be implemented among the general population; that campaigning for equality would be about the longer game.

However, practically overnight, a great many of these very adaptations were implemented. And why? Because for the first time, non-disabled people realised they needed them too.

In all honesty, I’m finding it hard not to take it personally. Not as me, as Pippa, but as part of the disability community. Why is it that our needs didn’t matter when it would ‘only’ be of benefit to the chronically ill population? And even now that these changes have been implemented, how have we still somehow ended up at the bottom of the pecking order?

I’m only one person, but here are a few examples of my own that came to mind:

 

  • My undergraduate degree was compromised because my university wouldn’t record lectures so I could more easily work from home. Now, entire programmes of study are being made available and even enhanced online, so that students’ education away from campus remains as consistent as possible.

 

  • Behind the scenes, I’ve been doing what I can to make the arts more inclusive for those unable for health reasons to travel and experience a typical theatre environment. Fast forward to now, and for the first time, we’re spoiled for choice for productions we can engage with and experience online.

 

  • Supermarkets are working to ensure their online shopping delivery services can cater for as many people as possible, and those identified by the government as the most high-risk and vulnerable are rightly being priorotised for delivery slots. However, people on the hypothetical next tier down, chronically ill people who aren’t well enough to leave the house to grocery shop (and haven’t been for some time), who have been doing online delivery shopping in this way for years, can no longer get their delivery slots. They’re not allowed to self-identify as vulnerable or gain priority, meaning many are genuinely going without food so that the non-disabled Karens of the world can stock up on loo roll.

 

  • I spent years fighting for employment opportunities that matched my skills and experience, where working from home wouldn’t be seen as a disadvantage or unreasonable. Suddenly, virtually every job in every industry has become possible to sustain by employees working remotely. A special shout-out goes to any and every person who is now producing tips and guides on working from home after their grand total of two weeks’ experience in this area. A particularly special shout-out also goes to those commissioning these projects and assigning them to these rookies, rather than those who’ve been in this position through lack of choice for years. Not that I’m bitter or anything…

 

Now, I’ll be the first one to say that of course it makes sense that all of these things have happened now, because frankly there was no other choice. We’re in a situation where people have had to make these things work, because otherwise there’s a very real chance that society and our way of life would practically disintegrate altogether.

It’s just infuriating to think how quick and easy it was for these very adaptations to be implemented and maintained. If these very same adjustments had been made when requested by chronically ill individuals over the years, I can confidently say our quality of life would have been significantly improved.

However, I know it’s important not to dwell or harbour these frustrations too much. The next real test will be to see just how many of these adjustments will still be readily available, once ‘typical’ life begins to resume… whenever that may be. I’m choosing to indulge in the optimistic side of my thoughts, and hope that this rather strange period we’re living through could well be a facilitator in helping the world become more inclusive for all. Now that we know our society can adapt and become more inclusive when required, there’s no excuse for these actions not to be extended more readily for disabled people in years to come.

So, I’ll be honest. My own sense of self-worth and purpose has taken quite a knock from all of this. It’s difficult to know that all the work and effort I put in pretty much counted for nothing until the general population were forced to take a few tentative steps in our shoes and realise just how much these things matter. Were our own words and lived experiences not enough?

For possibly the first time ever, I recently lost some of the motivation to continue campaigning, initiating and innovating; all things that have brought me so much joy and purpose in this unpredictable life of chronic illness. However, I’m making an effort to remember that it all still matters. There’s never going to be a time where disabled voices aren’t important- in fact, in the coming months, it may well be that they’re more important than ever.

It’s a tough time for so many people at the moment, for so many reasons, and in the grand scheme of things, I’m still one of the lucky ones. This particular personal battle to refocus and find a new sense of purpose is nothing in comparison to what others are facing in these trying times… and that in itself makes me all the more motivated to figure out how I can continue to do my bit, in a way that counts.

If you, whoever it may be who is reading this, have experienced similar despair or frustrations recently, I hope you find comfort in knowing you’re not alone. Take all the time you need to regroup and figure out what you think about it all, and I feel confident that in time, we’ll find our sparkle again. Hang in there. We got this.

Thanks for reading! You can read more about me here, and find my own chronic illness story here. If you liked this piece, you may be interested in my other Chronic Illness posts too!

20 thoughts on “Chronic Illness And Self-Worth In A Global Pandemic”

  1. Such a powerful piece of writing and exactly what has been spinning around my head. Its comforting to know I’m not the only one to have had these feelings and thoughts. I’m finding the noise around isolation and the current lock down particularly hard when like many chronically ill sufferers that’s been life for so long. I truly believe that the world after this will be alot my kinder, compassionate and inclusive to all.. It has to be x

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  2. Wow youve hit the nail on the head, you have basically summed up what i would of said thank you, brief history about me im a 43 yr old woman with fibro and anxiety and depression, BPD and cfs, my back and hips got severely worse last year and i now i walk with a stick my mobility is poor plus im getting worn out with doing the smallest of things,before this virus hit i also hardly left my flat only 1 or twice a week to meet a friend for coffee,also did my shopping online, now i also have problems getting a slot for my shopping and i guess thise that have booked it could walk or drive to the shop for their shopping it doesnt seem fair! Without my son helping i would of starved and had no meds! Noone looked out for me no neighbours checked to see if i need anything even though they knew i walked with a stick and struggled i see them when i am on my balcony but they just turn away were is the community spirit, it gets your mood very low at times like this.People dont realise what they are experiencing and doing now is what we chronic illness sufferers live with day in day out and like you said only now are we able to watch theatre productions free online were was this before! I love theatre but it is one of many things i have had to accept i cant do anymore also visiting art galleries for free online why now and not before! The mind boggles …sorry its so long i get so passionate about disabilities Stay safe 😷💜

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    • Thank you so much for reading and for sharing your experiences Charlotte, I’m so sorry you’re having such a tough time of it. Really glad you have your son at the very least; keep your chin up and enjoy everything you can find online because you deserve it. ‘The Shows Must Go On’ is a new YouTube channel that’s going to be sharing a full-length musical each week, in case it’s of interest! X

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  3. Really great article, Pippa – I think you have expressed very eloquently what a lot of people with chronic conditions have been thinking and feeling.

    I picked up on your comments about expertise in working from home – just wondered whether you might like to consider writing a guest blog for Independent Living on that topic? I’m being bombarded with offers from the “Rookies with two weeks’ experience in this area”!

    Very best of luck with regaining your sparkle – actually, I don’t think you’ve lost it; it really shines through here 🙂

    Try and keep well,

    Frances

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    • Thanks so much for the kind words, Frances! I really do appreciate it. Would love to chat further about this; will drop you an email on Monday!

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  4. Pippa, what a fabulous post.
    It’s amazing how things changed and so quickly. It’s taken a pandemic to realise that all those things are possible because the majority need them. But when the minority needed them prior to this, it wasn’t so simple.
    Your voice is and always will be important. Don’t lose it.

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  5. I’m with you.. it’s been really hard seeing the country adapt when apparently it was impossible before. It’s been hard seeing people do so much with their time when they are isolated. All these online things are great but actually we are still to ill to join in with them because they are geared to the ‘healthy’ people! Just got to try and block out the noise and hope some of the new ways of communicating, working around when this all over. Sending love and don’t be hard on yourself…..it’s also okay to take a break for campaigning etc etc at this point in time and just focus on you for a bit. Xxxx

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  6. Fabulous article, Pippa! It’s so true that, almost overnight, people are willing to make sweeping changes – because they have to… and yet those same changes have been deemed impossible until now.
    It’s also deeply frustrating to hear people moaning about a few weeks isolating – mostly with their families – when people with chronic illnesses are so often alone and are given no scope to moan.
    Let’s hope that, like WWI was a game-changer for the campaigners for women’s rights, people remember and show a little more sympathy and flexibility when this is all over.

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  7. Really enjoyed your insights Pippa, especially how seeing people launch all these new projects can affect us. I was getting quite discouraged by people asking how I’m keeping busy. After some time to think, I realized I needed to once again explain my limitations. I don’t suddenly have energy or health to do more than the usual, and I don’t need to put that pressure on myself. I needed to remind myself that productivity isn’t where my worth comes from!
    Agreed, while it’s wonderful that so many resources are available, it’s frustrating how it wasn’t a priority until now. I’m also remaining hopeful these changes will stay in place.
    Keep sparkling Pippa!

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  8. Fabulous Pippa and you have voiced all my concerns I will never use Morrisons again for one I have had a regular order every four weeks for a long time and I can’t get a slot, they really should be looking after their regular customers too xx

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  9. hey Pippa, I know I’ve been quite late in reading this but I loved this post! I’m with you. school work and academic assignments stop me from doing what I want to. and I specially love this para.
    “The thing that’s getting to me, however, is that it took a global pandemic for the UK to accommodate the very adaptations disabled people have spent years of their lives fighting for.”
    not only UK, India and other countries of the world too.
    I’m amazed how teachers are sending worksheets and other assignments without me having to remind them, now that other students need it too.
    I’m not chronically ill. however, I’m VI and relate to it so, so much.
    keep well, stay safe, you are amazing.. all my love and best wishes from India are with you always!

    love youuu xxxx

    thanks for this post 🙂

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  10. You’re amazing & inspiring Pippa. I’ve been ill with something undiagnosed on top of my usual CFS since January and actually feeling guilty that I’m not yet recovered. After all, folks with covid often recover in a few weeks! This situation really brings back twenty years of misdiagnosis, being told it’s all in my head, until a tick bite made me realize antibiotics removed most of my symptoms. Of course those twenty years of chronic infection ruined my immune system and ten years later I can’t get off the antibiotics and will probably someday die because of antibiotic resistance.

    Sorry, that is the kind of whine I don’t usually allow myself. You’re right on. The current worldwide crisis has brought back, in full force, memories of me sitting with FOUR doctors standing over me, aggressively telling me to go to psychiatry. Not even compassionately but aggressively. Two years later I got bit by a tick and that finally proved I wasn’t nuts.

    Of course I feel for the multitude out there, sick and dying. But like you this has highlighted what I’ve had to adapt to. It feels huge and in my face today.

    I’m having an emoting day today—-have to let it out once in a while. But tomorrow I’ll get back to plugging on through. Thank you for your sharing, and the bit of inspiration you leave me with in knowing that someone else has to periodically ride the fence of both peace & acceptance along with feeling the results of our very real illness.

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    • Thank you so much for sharing Terry, and for the kind words. Never apologise for letting it out, heaven knows we all need to every now and then! I really hope easier days are on their way. Hang in there xx

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  11. Hullo Pippa
    Just discovered you and this post which put into words quite a lot of what I’ve been feeling, but not really identifying. I have long term M.E. and am 71, so am blessed by not having to earn a living any longer, but have a basic pension due to the illness. I recently became involved with a local issue whereby an environmental group were campaigning to persuade shops to close their doors in Winter to conserve energy. I I wrote to the local paper stressing that I applauded the intention but pointing out that this move created difficulties for scooter/wheelchair users, suggested door bells to ask for help when needed, and expressed the concern that big shops with automatic doors would benefit unfairly. I was contacted by the paper to enlarge, and they published the result. The environment group responded by suggesting door bells (!), and insisting that parents with push chairs were managing perfectly well. I decided to shut up at this point. Now of course our small shops have to struggle with the new regulations and I’m thinking of writing another letter asking how they will cope with closing their doors, installing bells and cleaning them (none have bothered), dealing with wheelchair users queueing in the rain to gain access etc. I wonder what aggressive reactions this might prompt, but think I might have a go and find out.
    Keep it up,
    Dorothy

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    • Thank you so much for sharing Dorothy, and thank you for all you’re doing! It’s so important to be having conversations about these issues and facilitating change. I hope today is as kind as possible to you xx

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