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, and with this week being Invisible Disabilities Week, 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…
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 enjoyed a good education and have a regular-ish income. And 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 be mindful of and steer clear of these kinds of 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 as 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.
For me, 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 trying to balance sitting somewhere in the middle of being capable of being independent and still needing support to live the life you choose. To try and demonstrate what I mean by this, here are some examples of my own:
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 unable to physically change my bedsheets without assistance, but don’t qualify for any social care, nor can I justify the costs paying for regular domestic help.
I can only walk for a few minutes at a time, and standing leaves me really unwell, but even after four attempts, 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 bus pass in the new year 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 card to slightly reduce my prescription costs. I’ve made arrangements with family and friends to help with domestic tasks and I’m getting more confident with asking others for help when I’m struggling. I pay extra 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 does feel 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 couple of 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 makes 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 working even 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.
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Just one more snap from this past week and a few words to wrap-up quite an… eventful fortnight 🙈😂 It’s been a busy one and I’ve loved sharing some snippets on my blog and social media… but I suppose that’s just it: they’re snippets. And I don’t think I’d be being true to myself without a gentle reminder that the highlights reel behaviour has very much been out in full force recently. You might have seen me doing outing after outing, post after post. What you won’t have seen is my limbs shaking and joints swelling up, the time-consuming admin of trying to sort reasonable adjustments, the complete haze where my senses won’t function together, the guilt of feeling like I’m being a burden by asking for help, getting completely stuck in town due to a lack of accessible transport, symptoms flaring in protest at every little change in the weather, and the absolutely charming builder chasing me home asking who the power-chair really belonged to the other day. And that’s not a comprehensive list by any means. Behind every post at any given time, there are a million other things going on that often go unseen, the way disability-related issues so often go unseen in the world we live in. And once again this is an accountability post, because I need to get better at sharing them. The last thing I’d ever want is for anybody to look at my online activity and feel alienated or invalidated or think that I don’t suffer the consequences of trying to live my best life with this condition. I really do. And yes, it’s hard not to let it really get you down or completely break you some days, but in my eyes, it’s about cherishing the good times when you can and holding on to them when things aren’t so peachy. And I’m so glad to be able look back on some of my memories from this time and know that they absolutely were worth it. Despite everything, I know I’m still one of the lucky ones, and I will never take these opportunities, nor my level of health, for granted. And I hope you lovely lot have as many of your own moments to cherish as possible, too. 🌻💛
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 have 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 NHS crisis right now, 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 don’t even get close to receiving everything 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. For me personally, I think recognition would be a big thing: but then again, by no means do I want to play the victim when I know that others would feel blessed to have the quality of life I have now. Sympathy makes me feel incredibly uncomfortable, and that’s not why I wanted to write this post. It’s important that I make clear that 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, and 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, for Invisible Disabilities Week, it seemed only right to highlight some of the challenges that 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 ME/CFS in the UK by visiting the ME Association or Action For ME. Please note that I am not a medical professional and cannot offer advice on your symptoms or diagnosis: if you have any concerns about your health, please book an appointment with your GP. As mentioned in previous chronic illness posts, I’d also hugely appreciate your co-operation in *not* sending unsolicited advice, no matter how good your intentions may be. Thank you for understanding.
Are you an ‘in-betweener too’? What invisible challenges do you face, and what helps you to manage?