I vouched at the beginning of last year that i’d be transparent on mental health, disability, recovery, and even started an instagram account to log all of that. Ironically, it’s chronic illness that’s caused the downfall of that account due to a lack of spoons to post and update, constant brain fog and a lack of self validation about my complaints of the illnesses (which also does the same over here on my blog).
You can probably guess from the name, chronic illnesses are not fun.
They impact every little bit of your life, every single day- no matter how ‘big’ or ‘small’.
There’s a lot that able bodied people don’t see and never will, because it’s unique to disabled people, but it’s also every day.
“We all struggle to get out of bed some mornings” is never a comment of any use, and completely demeans the time I spent bed-bound and days of bad flares, as well as the impacts they had on the function of my daily life… and they’re still a part of my daily life. Maybe it’s from the long lasting affects of a singular (or past-tense prolonged) incident, or maybe it’s the struggle I still have, but chronic illness isn’t all you see on instagram, even when we do get more honest about it.
SO, here I have a few home truths about my chronic illnesses:
Everything takes more time
Haste? I don’t know her.
For non-able-bodied people, there are things that are part of a routine, be that daily, weekly or even more frequently. We can try to create a routine as chronically ill folk, but it’s not something that’s easy to stick to.
If you’re a student, study plans are impossible. You can say ‘i’ll spend an hour catching up on these lecture notes and then get cracking with my essay’. Eight hours later you’ve copied up half the lecture and haven’t enough energy to move for a bathroom break.
Sometimes, days are made void, and others you think you can start something up, but maybe it’s a little over ambitious.
The example i’m caught up over is a moment from my bath recently. After an hour bathing in a a ceramic dish filled with soybean-rich water (thank you Lush for the ever so nourishing ‘Lamb’ bath bomb), I decided to shave my legs – not that you ‘should’ or ‘shouldn’t’, but in this case, I felt most comfortable (for me, my personal choice fluctuates). 20 mins later, I’d just finished one leg (and for reference, I only shave below the knee) and goodness, it was a struggle. Though I was not standing or doing any kind of vigorous activity, this drained me and honestly, it caused me agony- I struggled to pick up the razor once more and attempt the other leg , because it was exhausting enough trying to do a singular leg. I sat in the bath staring at it for at least another 10 minutes before attempting again. I felt blessed that I was able to complete it in the end.
Then came my hair…
Sometimes (most of the time), it’s hard to do basic self care things at all!
These include washing my hair, brushing my hair, brushing my teeth- the pain raising my hands to wash my hair causes and the amount of spoons it uses up is totally surreal. If you’ve not felt it, I don’t think you could ever imagine it- I couldn’t til it hit me! Some times it’s about the preservation of spoons- this means you may choose to not do this because of the severity of the adverse impact it may have on you. Other times, you are restricted by the physical impossibility or at least the discomfort it causes.
It’s hard to enjoy your ‘usual enjoyment’
I’m an English Literature student and was fated to be from my early teen years, having a strong passion from being immersed in a world created through the curvature of words, arranged in a poetic fashion. Chronic illness took some of my time away- though not the passion deep in my heart. Brain fog has caused me to go long periods of time struggling to get by words, enjoy them, be able to focus. Fatigue has left me this way too. Pain has consumed my thoughts beyond this, and one appointment after another takes up the time in the day.
I never lost my passion for literature, however, it’s been a struggle to maintain, to do so much as read a book through. That’s why in these moments I can, I cherish it so deeply.
Disclaimer: I still read the works for assignments, it just takes longer and doesn’t have the side of reading for fun served with it. I also have always enjoyed analysing literature so aside the brain fog, I find this still natural to me.
Top tip: If you, too, are a struggling bookworm, I really suggest poetry! I find if I can read a singular poem, it fulfils my heart whilst not being too much.
This point can be made a in a singular sentence: You don’t see the tears. Even when open book influencers share their photos or experiences (as I have myself before), since they don’t capture the peak of it, you won’t know. Nor will you be able to see the agony from an expression. Especially when we’re so used to it.
Hospital trips and other people
Something my guilty and paranoid self gets caught up in is the impact my illness has on others. Should I be worried about this? Absolutely not. It’s out of my control, and they care about me. Do I worry? Heck yes.
My main set of worries does spout from the people around me, to be honest. Not the people closest to me, because they are super understanding typically. Still, I can’t help overthink the sleep they lose when the group chat bears the ‘Lauren’s in hospital’ message and they ask me to update them at every pole, the exhaustion of the person sitting in A&E with me until 3am, half the time to be given painkillers and sent on my way with a ‘yes, you’re having a flare up… we can’t do anything unless you’re dying, go see your specialist’… a tough one to swallow.
You feel the guilt of being in hospital, too- if it’s a flare and they send you home, our heads spin with ‘I just wasted their time’, but it’s not that simple. The one time you don’t go will be the time you need help (and I learned that from refusing to let someone call an ambulance from my workplace, this time last year).
The truth is, you have nothing to feel guilty about and the people with you care about you, regardless- sometimes, it’s just hard not to overthink it, or flash through the ‘but — has it worse than me’ complex.
All that ableism they throw at you
I recently wrote an account of ableism faced when using a disabled toilet, and yeah, it really did suck- but this happens everyday, most days.
We all know ableism exists, and spoonie twitter will fight with that until the end, but there are certain things that a lot of abled people don’t understand coming under ableism.
- I get stared at in the college corridor for using my walking stick. This can make you somehow feel as if you don’t belong, which is not nice at all – just because I’m 20 doesn’t mean I’m not disabled.
- Medical receptionists- You’d think they would have learnt?
I recently had a pain management appointment and when I came out it was a lady i’d never met before on reception. My pain management appointments are booked through my GP surgery (and I really do praise the staff there) and when I asked to book another, the receptionist was very patronising. I didn’t appreciate her asking ‘what kind of pain is it’ to ‘see the best GP’ when I clearly stated it was a different kind of appointment, and it was for chronic pain, but still she chose to look me up on the system rather than booking the appointment straight up- because she looked at me, saw my young body and assumed- as so many do. What hurt me the most is that she’s in the medical industry, and I can’t be the only one in Hampshire to suffer from Chronic Illness?
These experiences unsettle me and it’s not fair that this is normalised in some way.
Chronic illnesses are something you can frequently not see, and are usually not honoured when you can, you know? It’s tough enough without all the doubt, patronising and unwelcome comments.
Please, please, understand us. Respect us. See us. We are valid, and our conditions are- ALWAYS.
Big love to any spoonies out there. I hope this is something you’re able to share about and we maybe can finally get some damn awareness!