For The ‘In-Betweeners’: The Invisible Challenges Of Moderate Chronic Illness

two images of pippa. left image features pippa in pyjamas, holding soft toy, with nose cannula and headgear, right image featuring nice dress and hair and make-up done for going out

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?


43 Responses

  1. Thank for shar. I feel like you. I was an inbetween person until my body finally made me stop. Like you sometimes guilt keeps me ftom sharing. ThIs week i sharded my story.

    1. WEll said Pippa. Great that you Can Ask friends to help you. I try to keep things to myself and then wonder why NOBODY “gets it”

  2. Great piece Pippa. I’m now becoming toward the more severe end of moderate. I recently missed two family weddings and don’t get out much. I feel like when I dip down below An Energy threshold my mental health drops as well, and that’s really frustrating as it’s harder to be positive. I think for those of us with moderate ME, it’s the lack of energy to do anything beyond just surviving and that’s tough. I hope you’re able to gain access to a blue badge.

  3. thank you for your post!
    I can com relate and feel i am also an inbetweener And CURRENTly looking for work i can do from home as i too can not work full time or be reliable enough to have a work contract.

    Thanks again for sharing this, i shared your post on facebook to also raise awarness.

      1. amazing. Ive need a way to find more regular work. I’ve just taken a part time Christmas job in a shop and after two weeks work (i work ALTERNATIng short days) i’m stucK in bed with swollen glands. Sorry it will only leT me write in caps.!

  4. A VERY THOUGHTFUL PIECE PIPPA and very helpful for lots of people with fatigue-heavy illnesses that also fluctuate. unfortunately employment law is not flexible enough for people with such illnesses – you do well to do every thing you do do and your blog is supportive to many. I do hope you can get a blue badge to enhance your chances of social contact and getting out and pip at least

  5. Thanks Pippa for a very well written and inteResting blog that i enjoyed reading and i can relate to everything you say.

    My world has become increasingly smaller over a peRiOd of six years But i try to appreciate the Little things that i can still do.

    Sorry, not sure why its all in caps – cant seem to change it

  6. This is showing up as block caps here – can’t seem to switch them off in any browser, so apologies if that comes out on the post…

    Great post. Older inbetweener here, slowly getting worse it seems. The guilt on sharing any good days is quite real. I try not to share the bad stuff as who wants to hear it? Not many… Even my wife, who is pretty patient, doesn’t really understand how bad I feel some days – it takes me being completely brainfogged and unable to converse before she really does. Well done on working part time, at least. I had to give up work and haven’t yet got to the point where I can reliably even work part time.

    I hope yours continues to improve and you have less of the bad times. Wishing you and us all positivity and the hope that more understand this condition, that we’re not left to feel guilty for having it, and having to prove we’re actually ill so much.

  7. Very true, Pippa. I received ill-health retirement at age 54 and I feel as though I have only just started to learn what it is to live and to enjoy life. I remember as a teenager, rarely going out on a Saturday night because I didn’t have the energy or motivation – but did not understand what that was all about as my illness was not diagnosed until I was 40. People see our public face but do not realise how much time we spend resting in order to achieve our few outings.

  8. You should look into getting the nhs pre payment certificate for prEscriptions, its only £10 a month & you get unlimited prescriptions with it, i’ve saved a fortune!. Great article 🙂 ( you can apply online or get a form from your pharmacy)

    1. Thank you Helen! As I said in the post, I do have a pre-payment certificate, but thanks for letting me know anyway. They’re definitely better than nothing!

  9. Hi,

    I too see myself as an inbetweener, although a “well” one. But I find that because of that I always prioritise the public face, and then go home at the end of the day dealing with all the symptoms in full force. I have never been able to manage a night out without substantial planning (spontaneity is not an option…) And normally regret the decisions I do make because of the massive implications on my home life. Just feel that because I look and seem healthy there is an expectation to be healthy, and struggling doesn’t fit in. Thank you for sharing your story, and I hope you have as many good days as possible

  10. Excellent blog Pippa.
    This illness has dogged me for 26 years now.
    But i have managed to build up a life again.
    There are still times when i feel bone crushing exhaustion, lose my words etc. And thAt’s when i realise i’m not resting enough and quickly return to 20-30 mins rest Every two oR three hours. And a sleep for two hours in the afTernoons.
    Despite m.e. I have brought up 5 children with help from au pairs when they were tiny and i was mOstly bedbound.
    I still have much fun and some outings but always, always pacing.

    Sending you warmest wishEs for a complete recovery and hope however it goes, you enjoy fulfilment, joy and a ggood and interesting rounded life.

  11. Dear Pippa,

    This really touched me as a fellow Inbetweener and M.E. sufferer. There’s another part of being an Inbetweener for me; it’s the constant feeling of impostor syndrome, feeling better on some days and the assuming it’s all in your head. It’s the mystifying back and forth of better and worse days which confuse me and everyone else (weren’t you using a stick yesterday?)
    Thank you for your blog and for putting into words what I feel.

  12. I’ve finally found my people!

  13. Brilliant article Pippa. I too am an inbetweener and finally gave up the battle to stay In part time emPloyment three years ago. I was terrified of not having a job but its by far the best and Kindest thing I could have done for myself. It was difficult as a single parent of a Teenager but has given us both a
    better quality of life. I am now a freelance writer and creative writing teacher, picking up odd bits of hOurs here and there. I think you are doing incredibly well despite your challenges. Our value outside of work is just as Important as Our value in it. We as MODERATELY chronically ill people Are by default watChers anD guardians. Wr have a unique position on the fringes of daily life, we can often see what people need and if we cant fulfil that need we can ask someone else to do it. This is an extremely important role (if unpaid) but very few people can perform it and to me it’s as important as my paid work. Thank You for sharing such an important perspective and all the best with everythinG you do.

    1. This is so wonderful to hear, thank you for sharing Rachel! It’s all about finding what works for you and your own circumstances, and I’m so glad that you’ve found the path you needed. Thanks so much for the good vibes, too!

  14. Not an ME sufferer myself but my husband is. I would say hes an inbetweeNer too but with each passing year is Sadly gettubg closer To the SEVERE eNd of the spectrum. We’ve got 2 young kids and another (unexpectedly) on the way. He spent most of December bed bound after catching a cold from me and the kids. I think he should have a blue badge and a wheelchair for the days he needs it but he doesn’t thunk he’s there yet. Not that we could afford to get these things anyway as our financial situation is tight at best given his condition. I cant work full time as i have to be around for the Kids. We are lucky in that we both work from home but he hasnt been able to work most of this monTh and without him his business doesnt ruN. Im sorry for the long post, its a but lonely at times as no one really gets it and sometimes i feel on my own in raising our family. I think your post was great Pippa and it very important to Help others understand what its like for all ME sufferers, from mild to severe and in-between! Xx

    1. Thank you so much for sharing this Jenn, and I’m so sorry to hear of all that you and your family have been through. I can’t imagine how difficult it must be to keep things going when things are tough, and I totally get how difficult even accepting potential support can be… but coming from an outsider, consider this your blessing to reach out and utilise anything and everything that could help you. You deserve nothing less! All my love and best wishes to you and your husband x

  15. Just found your blog. This sums up perfectly how i’m feeling right now. I started a masters course in september but had to take a leave of absence in november and now i’m doubting whether i should even try finishing it because when am i ever going to get the chance to use it. I’ve been signed off work as well, but like you i’m an ‘imbetweener’. I do qualify for universal credit though so that does help top up my income a little (at least it will now i am no longer receiving my student loan). but i am longing for the day i can be independent and live on my own and have a life i like. But all the best to you. Thank you for blogging.

    1. Thank you so much for reading Gemma, and wishing you only the best with what this year brings. No matter what happens, you’re not alone and I believe in you!

  16. This was really interesting to read as I am an ‘in betweener’ too and I can totally relate to many of the things you have shared. I am so glad I found your site !

  17. Thank you for sharing your perspective! I’m an in-betweener too and have often thought about the challenges and frustrations of being in the “space between”. I’ve had to modify my life in some ways, and it can be an isolating feeling.

  18. Hi Pippa,

    I’m an inbetweener to. I’m self employed, so that I can manage my work around my well-being, but I don’t earn nearly enough to support myself and can only survive by living with my retired parents. It is frustrating, but like you, most of the time I just accept what is and make the most of it, grateful for the privilege of having a family safety net. I’m glad you’re shining a light on this side of it though. It’s important to raise awareness! Thank you!

  19. Thank you from a fellow inbetweener. I am grateful to be at the ‘mild’ end of the spectrum but it still impacts every area of my life and it feels hard some days to see how I will ever improve/recover whilst I have to force myself through part-time work each week. I appreciate your posts and it helps to feel less alone.

Leave a Reply

Your email address will not be published. Required fields are marked *