I vividly remember writing this piece on a difficult afternoon where things felt, as they so often do, rather hopeless. At the time I decided there wouldn’t be any value in putting this out into the world, especially with this post being rather more sombre than my usual writing. However, after discussing the topic with friends and seeking their feedback, it feels like the right time to finally share these musings. So today, let’s talk about the invisible challenges of being an ‘in-betweener’, moderately affected by chronic illness…
Update/ Disclaimer: ever since I first published this piece, I’ve been rather bombarded with emails offering advice and opinions on the issues discussed below. Whilst I recognise that many of these messages have come from a kind-hearted place, I wanted to reiterate that in any of my work, unless stated otherwise, I am not seeking advice or assistance of any kind. Please keep reading until the end of the post, where I discuss the ways I’m dealing with some of these issues; many of the suggestions people have been quick to point out have already been mentioned in this very piece. I appreciate you reaching out, and I don’t want to seem dismissive or ungrateful, but the very best thing you can do for me is saving the valuable time and energy you’ve used in reaching out, for yourself. Thank you for your understanding!
Before we go anywhere with this post, it’s important to make clear that I recognise my privilege. I live in a country with a healthcare system free at the point of us, I have supportive family and friends, I experienced a good education and have a regular-ish income. Although I’m chronically ill, my condition could affect me much, much more severely than it currently does. I can and do count my blessings on a daily basis, and I mean that sincerely.
Today, however, I’d like to talk about the difficulties of my current situation and in doing so, I hope you’ll keep an open mind. Chronic illness can so quickly turn into the ‘who has it worse’ game, particularly online, and I hope that my own little corner of the internet can steer clear of these shenanigans. Please do keep reading until the end and hear me out, because I have no doubt that I’m not alone with this one.
When I think of my illness experience, I consider myself an ‘in-betweener’. If you were to think of my specific condition on a scale ranging from the most-well to the least-well a person could be, these days I would be hovering relatively close to the middle. To conceptualise that a little, a person *most-well* with my condition, with adjustments, may be able to work full-time, socialise, and live their life pretty much how they choose. Meanwhile, a person *least-well* with the same condition could be permanently bedbound, tube-fed, in excruciating pain 24/7, and unable to communicate.
My condition has an impact on every element of my life and dictates every single decision I make. However, with adjustments in place, I manage to work part-time from home, socialise, and with adequate preparation, leave the house. Not as much as I’d like to, but much more than I could a few years ago.
Throughout my experiences so far, however, I’ve observed a bit of a taboo when it comes to talking about us so-called ‘in-betweeners’: the unique challenges of sitting somewhere in the middle of striving for independence and still needing support to live the life you choose. To try and demonstrate what I mean by this, allow me to share some examples of my own… and when reading these, please do keep in mind the disclaimer at the top and bottom of this post. I am not currently seeking support or advice for the following issues, but simply listing them here to widen people’s perceptions of the issues us ‘in-betweeners’ often face:
I’m not ‘well enough’ to work full-time in a traditional occupation, but not ‘ill enough’ to claim disability benefits such as PIP and Employment Support Allowance to make up for the gap in my wages.
I require a minimum of four prescriptions a month totalling around £36.00 a pop, but I am no longer deemed eligible for help with health costs.
I’m physically unable to clean my flat myself, but don’t qualify for any social care, nor can I justify the costs of paying for regular domestic help.
I can walk and stand for only a few minutes at a time, but even after four attempts, still wasn’t assessed as *ill-enough* to require a Blue Badge (you can read more about that one here). I recently found out that I may lose my disabled person’s bus pass in the coming months too.
I need a transit wheelchair pushed by somebody else to go food shopping, but didn’t come close to meeting the criteria for a power-chair which I could use independently. I had to use a huge chunk of my savings to buy my own.
I’m plagued by debilitating symptoms almost constantly and I massively downplay how unwell I feel on a daily basis, but my illness is invisible. My lifestyle is severely limited by my health, but because I have some degree of functioning, I’m expected to just deal with it and get on with things, with minimal (if any) support.
And to be honest, I DO get on with things.
I seek accessible employment opportunities with part-time hours where I can pace myself and work from home.
I’ve sourced an NHS pre-payment certificate to slightly reduce my prescription costs.
I’ve made arrangements with family and friends to help with domestic tasks, and I’m becoming more confident in asking others for help when I’m struggling.
I pay a premium for food delivery and click-and-collect services, and book taxis to reduce walking distances.
I’ve found myself a little online community of chronically ill friends who’ve come to mean a lot to me, and I’m just about keeping my head above water.
The thing is though, it’s hard. Harder than I’d usually care to admit. A lot of the time it feels like I’m dealing with things all on my own. And that’s something I almost feel as though I’m not ‘allowed’ to admit, especially given the wonderful opportunities that have come my way over the last few years. To an extent, I can understand how somebody might look at my social media and think that I’ve got it all sussed out. And that can make me feel as though I’m at less liberty to admit that I’m struggling and feeling low, even to those closest to me.
But then I think back to times such as when I was at university, listening to my friends get ready for big nights out whilst I was laid in bed because it hurt to breathe. It’s days like last year, where I sat in waiting rooms reading about amazing blogger events that I was invited to but wasn’t well enough to attend. Days like last week where I dragged myself through work and quite literally just crawled into my bed and cried because I don’t know how I’ll ever be able to sustain supporting myself and meeting the additional costs of disability when even working part-time and from home can still make me feel this poorly.
Thinking about those days, which so often get buried under all the good stuff which is much easier to put out there, makes me wonder how many people are privately feeling a very similar way.
And don’t get me wrong, I’m really proud of myself for coping with it all pretty much single-handedly and achieving what I’ve achieved so far. But it’s painful to wonder what else I could accomplish, if only I had a little bit of extra support in place to enable me to do so.
But then there’s the flip-side. I know that there’s an ongoing NHS crisis, and I fully, genuinely support the fact that the increasingly stretched budget for care has to be prioritised and allocated to those who need it most. Heck, even those who need it the most often don’t get what they need. If I were to suddenly qualify for social care, for example, I think ultimately I’d feel guilty about it: I’d constantly be wondering if I was taking it away from somebody who needed it more.
So, my question is this: is there a solution? Realistically, what could we do for the in-betweeners? Is there anything we can do?
At this point, I’m not sure. Perhaps recognition would be a big thing? Then again, by no means do I want to play the victim when I know that countless others would be desperate to have what I do have. Sympathy makes me feel incredibly uncomfortable, and that’s not why I wanted to write this post. It’s important I make clear that my quality of life is so much better than it was a few years ago, and I’m not just saying that because I think I should. My bad days now are somebody else’s good days, and I always strive to remember that.
I do, however, want people to know that this way of life… well, it isn’t a walk in the park. It isn’t always what it seems, especially on social media. And if things are this tough for me, in spite of my privilege, what must it be like for the others out there?
This piece isn’t my usual chipper kind of content, poking fun at myself and making light of my situation. Instead, it finally felt like the right time to highlight some of the challenges that often go unseen and unspoken about. And if this allows anybody else to open up about their own difficulties and how they really feel about them, it’ll have been worth me putting myself out there.
You can find out more about my own chronic illness story in this blog post. Please note that I am not a medical professional and cannot offer advice on your symptoms or diagnosis. If you have concerns about your health, always book an appointment with your GP.
To reiterate one more time, I am not seeking advice or assistance of any kind. I am no longer replying to messages offering unsolicited advice based on a single blog post, so please use your valuable time and energy on yourself instead!
Are you an ‘in-betweener too’? What invisible challenges do you face, and what helps you to manage? Feel free to share your own experiences in the comments below!
Where to next?
- Shop my books and eBooks!
- The Hedonic Treadmill Of Chronic Illness
- On The ‘But They Didn’t Let It Stop Them’ Narrative
- The Turtle Of Overexertion: A Chronic Illness Metaphor
- Using Mobility Aids When You Have An Invisible Illness