I was talking to a friend this week about chronic illness and a condition I’ve suffered from for over half my life and despite the fact that she’s known me for 13 years, I didn’t realise I’d not got across what it was like to live with this condition. So, in talking to her, I was trying to come up with tips for how the healthy can help and relate to those who are ill and one of the things I landed on was to stop using the word ‘just’. It’s such a little word and we all use it all the time, just one more biscuit, just one more episode, just a short nap, but as a chronically ill person, I’ve really noticed the insidious nature of this word and the meaning behind it and how often it’s used to minimise. It’s so easy to make suggestions to chronically ill people to just try something, after all, what have we got to lose? But in actuality, we often have a lot to lose and we’re regularly teetering dangerously close to lasting or permanent deterioration, which most outsiders will have no awareness of.
Chronic illness is a cruel and confusing beast. It’s different for everyone and changes over time, be that years, months, or even minutes. It’s often not visible or only noticeable to others if they really look, if they really know you and pay attention to the subtle changes. I can look at photos from my past and see from the colour of my skin how well or ill I was, but you’d never know from the smile plastered across my pasty face. Of course, there aren’t any photos of the bad days because I was indoors, curled up on the sofa or in bed, for weeks at a time, trying to save up enough energy to participate in the world again, only to be told I looked fine and couldn’t possibly have been that unwell, as soon as I reemerged. Each condition has similarities across sufferers but rarely will you find an account that exactly mirrors yours and so when you’re inevitably told, “Oh I know someone with that and they got better by doing….” when you disclose your diagnosis, you have to make a snap decision about whether to go into detail about your own situation and how it’s probably different from theirs and contrary to popular belief, you’ve probably tried more “treatments” and “cures” than they’re even aware of existing and still you’re here just doing your best to exist in the world without needing medical advice from well-meaning strangers. Or whether you just politely nod, whilst screaming inside, and wait for them to hopefully move on.
The thing people so often don’t realise is that they’re not the only one saying this, every chronically ill person I know is bombarded by relatives, friends, colleagues, acquaintances and strangers offering suggestions, questioning their efforts and wanting updates and it’s exhausting! Most of us are well aware of how to best manage our conditions or the things that help us feel better and whether we’re doing those or not, is an entirely personal matter but as soon as you’re disabled or chronically ill, people seem to think your medical history is fair game and up for discussion and that if you’re not actively working on improvement 100% of the time, then you’re clearly malingering and don’t want to recover. I don’t even know where to begin with describing how wrong this is. Firstly, it’s personal, private, and nobody else’s business. Secondly, it’s so utterly unrealistic! I can’t tell you how exhausting being chronically ill is, and that’s not just the fatigue caused by so many of these conditions, it’s all of the added extras they bring with them: the admin for taking medication, organising and attending appointments, chasing things up, planning your diary, planning things around your care/support team like me needing to organise appointments for when Joe’s off work but also trying to not wreck every day off. There’s also the very common experience that we have lower energy levels and activity saps far more energy for us than for healthy people and therefore our candle is burnt at both ends, by having less energy to begin with and tasks taking so much more effort than they should and having to factor in pacing, rest, and how on earth you can fit chores that have to be done into limited energy windows. Then there’s all of the reorganising that has to happen when you randomly get a flare or a crash. I’m trying to learn to not put off the washing up because I inevitably end up getting a migraine, tremors, or debilitating fatigue and not being able to do it and I can’t tell you how sick I am of running out of crockery when I need it most! On top of all of that, there’s the emotional side – the grief, the feelings of failure and guilt and resentment and anger and sadness and fear and so many, many things. I’ve been ill since I was 9. In many ways, I know no different, I certainly don’t remember much that’s different from this, but I still spend so much time comparing myself to others, wishing I could do what they do, be where they are, achieve what they can achieve. I know I’ve done astounding things for someone who’s been as unwell as I have, I know plenty of people would look at me and wish they had what I do and I am truly grateful for what I have and have managed and I’m forever grateful to not be sicker than I am, but there’s always that underlying anxiety and worry that it’ll get worse, that another piece of functioning will drop away, that the next infection or metaphorical roll of the dice will make things infinitely harder or worse and that feels impossible to manage.
It’s for all of those reasons and so many more that it’s so important to not add ‘justs’ to our burden because however much you see us doing, trying, achieving, or not, you won’t be aware of what’s going on for us beneath the surface and the toll it’s inevitably taking. You might think it’s a tiny thing you’re suggesting and to you it’s possible it would be, but each change to our routine, each new strain on our system, each thing that requires more concentration or brain power is another thing draining our resources and for many of us who are running a very limited system, as soon as you add something in, it takes the place of something else and that falls by the wayside. I have a finite capacity for energy use, I can add in yoga but it might mean I can’t wash up today, or I can have a therapy session but I can’t then read a book, every decision I make is weighed up and balanced against what I have to do versus what I want to do and knowing I’m never blessed with enough energy to do everything on my to-do or want-to-do lists. Everyone will have an opinion on what I should prioritise, what I simply must do and what I should never bother wasting energy on again but those will differ from person to person and none of those people are me. I had it drilled into me when I was a chronically ill child that I must do the important things like going to school and thankfully, I forget now who it was, but a professional of some kind, and possibly my mum, made it very clear that I absolutely had to be allowed to do things I enjoyed too. My school were trying to make me just do academic subjects but I needed to be allowed to have fun, to enjoy things and to be a normal child by doing subjects I loved or hobbies I was passionate about and so all the time I was capable, I was supported to continue with ballet lessons and study creative textiles because they were the things I enjoyed. This was often very loudly criticised by people around me and I felt a lot of confusion and guilt when engaging in things I enjoyed because there was always a long list of things I “should” have been doing that I could’ve been using my precious energy on instead. It means I still struggle with these feelings now. I gaslight myself relentlessly with criticism and comparison to others about why my flat isn’t pristine, why I’m not studying from home, why I’ve not been able to set up a successful business or keep my environment cleaner and tidier. On rational days, I know this is because I’m running on a broken battery, I’m trying to do 100% with a battery that at most charges to 50% so of course I can’t do what everyone else does and on top of that, each task that takes someone else’s battery down by 5% is actually taking mine down by 10-20%. I have to remind myself that it’s not because I’m lazy or that I don’t have willpower, it’s that I’m genuinely working with completely different conditions (literally and figuratively) and expecting myself to do what everyone else can when they’re not experiencing everything that I am, is completely unfair and unrealistic. One thing that’s helped with this which I’ll go into detail about in a future post is getting a smart watch that accurately tracks my heart rate, my sleep, my activity and other vitals and as a data fanatic, I can’t tell you how much it’s helped to see this data plotted on graphs showing exactly why I’m feeling so rubbish and declaring that it’s actually fair enough that I don’t do more and that actually I’m doing plenty when you look at what I’m working with. Like I say, that’s a story for another time but it’s certainly been eye-opening for me.
Something I find it very difficult to explain and remain impartial about is this really fun thing in society, at least Western society, I can’t speak for others, where we blame and ‘other’ people who are disabled or ill. I know exactly why we do this, it’s to protect ourselves and make the world feel safer because if you’re different from me and my difference is the reason I got sick or disabled then you don’t need to worry because you’re not like me and therefore won’t end up like I have. But the truth is, we’re all one unlucky roll of the dice away from sickness or disability, they’re not caused by failure, faults or personality types, in fact, the condition I first became chronically ill with, ME/CFS is actually known to affect high achievers and Type A personalities, far more than any other group, despite it being stigmatised as laziness and deconditioning. Most people will be horrified and state they don’t think like this but there are very few healthy people I’ve ever met who don’t have at least some of this attitude internalised. It’s completely natural. I’ll freely admit that had I not got ill so young and had my world view turned upside down and inside out for good measure, I’d have been loudly proclaiming that people just needed to buck their ideas up and have a positive mental attitude and that would sort them right out. How wrong that is! If people don’t want to face reality and realise that it’s just luck that means that I’m ill and they’re not (yet), then so be it but I would love for people to look inwards and dispute their thoughts and beliefs when it comes to dismissing or othering those around them because I’m not ill because of my personality or some kind of failure and it’s not my fault, I was just unlucky and I do the best with what I have, regardless of how it may look. That’s all I can do and that’s the most that should be expected of me and some days that’s too much, I can’t always do my best, sometimes half-assing it is as good as it gets and that needs to be acceptable too.
All this to say, in a long and rambling Lucy-style way, that despite knowing someone for over a decade, it can be very easy for them to not understand what your life is like and to really underestimate what you’re going through. It’s easy enough to do that to yourself, especially when you’ve been treated badly about your conditions and how you’re dealing with them and so it’s even easier for others to do the same. It’s also never too late for people to learn, to find something that gets through to them or reaches them in a different way and to try not to give up on those around you who don’t get it yet. For healthy people, it’s incredibly difficult for them to understand something that’s never happened to them, the idea that you get sick and then randomly don’t get better when they always have, is very alien and very scary and for those of us who’ve gone through that, it’s alien and scary to us too, but we know it happens because it’s happened to us and we have to adjust our reality to that new information and we quickly realise that doctors, science, the whole field of medicine and health are absolutely not what we think they are when we’re healthy. They’re not all-knowing, curing, caring beings who are fascinated by newness and inquisitive about fixing issues, we discover that diagnoses of elimination exist, that there are A LOT of things that medicine doesn’t know and worse still, a whole load of things they’re not even interested in investigating. We learn how to split up our conditions, to minimise or not state any mental illnesses we might have for fear of anxiety being blamed for any unexplained symptoms, and we learn to live with levels of suffering most people don’t even realise are survivable, let alone ignored and deemed tolerable by doctors who tell us we’re med-seeking, addicted, or have a personality disorder. My partner had a baptism of fire when beginning to attend appointments with me and I still remember the rage he used to leave the appointments with, often ones I came out of thrilled because I’d been listened to for once or got a referral to a specialist in months’ or years’ time. It’s a different world that we inhabit but until you cross over, either temporarily whilst accompanying us, or by becoming one of us, you don’t realise that this world exists, that it looks the same and sounds similar but is so completely different and scary and isolating and that no one is coming to save you, fix you, or make you better.
What we need most of all (apart from decent treatments and cures, those wouldn’t go amiss) is allies. We need people alongside us listening, understanding, accepting, trusting us, fighting for us and believing us. We need you to stick up for us, to fight our corner when we can’t, to accept our best, to believe what we tell you about what we can and can’t and are and aren’t doing, to meet us where we are not constantly push us forwards, to realise that whatever frustration or anger you’re feeling about this pales into insignificance in comparison to how we feel living it all day every day, we need you to understand and to realise when you don’t and to try to but don’t make us do all the legwork – watch programmes about the conditions, find online support groups or advocates, read research papers to find out what these conditions are like to live with and what your loved one is experiencing and remember that underneath it all, we’re still the same person but chronic illness and disability changes you, it can’t not, and that’s ok. It’s very hard to adapt to and accept these changes but there’s no way of remaining exactly as you were before you became chronically ill or disabled and other people need to adapt to this too. The biggest change you can make today though is to stop minimising and stop saying ‘just’ because all of those things being suggested to us are overwhelming and alienating and they can convince us that we’re disbelieved and that our best isn’t good enough and ultimately they can lead to us pushing ourselves so hard that we permanently deteriorate. ‘Just’ is the start of a slippery slope and while it’s often meant well, it’s usually unnecessary. We’ve got this, it ‘just’ might not look or feel like it!
In The Midst Of Madness 