Hello lovely people,
Welcome to the end of my fifth week of isolation and thank you to those of you who have been
joining us for our weekly livestreams, every Sunday at 4pm UK time.
Even though this week was actually on Monday because I had a terrible migraine. Ehem.
But I hope to see you this week.
By the way if you like my hair, I've made an IGTV showing you how to do it and that
is linked in the description down below.
In today’s video: everything I hate about the chronic illness warrior narrative-
- and it’s a lot
[soft jazz music]
So buckle in and let’s get to the polite but sarcastic ranting!
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Small disclaimer:
No don't start drilling again! Oh my God!
They are drilling again!
A small disclaimer: these are my opinions. If you feel differently it doesn’t make
you wrong or invalidate what I’m saying, it just means we feel differently. I really,
really want to know your thoughts on this so please do share in the comments but do
try to avoid arguments. All viewpoints are valid.
I’ve noticed recently that the warrior narrative has been very prominent in our news and for
obvious reasons. The UK’s Prime Minister was recently laid low with COVID-19 and when
he recovered the media were quick to applaud him for ‘battling’ the disease and colleagues
pointed out that he had always been ‘a fighter’ as if sheer willpower alone had
got him through the illness.
- and not, you know, the hardworking National Health Service whose budget he had previously
tried to cut…
Have you ever noticed how people talk about even minor illnesses, even colds, with the
language of war? We say we’re ‘fighting a cold’ or ‘battling the flu’. We call
people with medical conditions ‘warriors’ and encourage them to constantly ‘battle’
their illness and ‘push’ themselves.
Personally, I’ve lived with two genetic disabilities all of my life and those have
put me in a state of chronic illness: I’m unwell. I’m always unwell. I’m not going
to get better. And I don’t think that makes me an inspirational ‘warrior’
it just makes me Jessica.
It would be an injustice to myself and others to say that it isn’t a struggle to live
with a difficult body but the narrative of it just makes me uncomfortable.
- Granted, could also be because I’m a Quaker pacifist.
But, my friends, embedded in the narrative of warrior life and militaristic terminology
is the belief that we can overcome anything... if we just try hard enough.
Which...
- I get through my day thanks to medication, love and excuses.
[fairy dust sfx] And a lot of Diet Coke.
And sure, I do have to put a lot of effort into getting out of bed in the morning because
I have the energy levels of a very active slug but
BUT on the days when I’m overcome by
pain and can’t get out of bed, I don’t really think it’s because I haven’t tried
hard enough.
- I mean, there is definitely a tiny part of me buried deep down which thinks that all
problems I face are because I haven’t tried hard enough but that’s why therapy exists.
I resent the implication that whenever I’m overwhelmed it’s my own fault for not keeping
the incorporeal dogs at bay and I don’t particularly want to spread that thought.
People who die from coronavirus did not ‘let us down’ because they ‘didn’t fight
hard enough’, the onus is not on them and them alone!
Life is nuanced, people!
Whilst the ‘well what does that say about the people who DO die?’ argument is an obvious
minus of the warrior mindset there are other reasons I dislike it. A rather large one being:
it just doesn’t work!
As we’ve all now been learning from weeks of lockdown amid a global pandemic… being
in a constant ‘fight or flight’ mode is terrible for your mental and physical health.
Also your face.
- have you SEEN the bags under my eyes?!
[boing sfx]
We can divide those living with illness into two categories: those who have a chance of
getting ‘better’ and those who will be living with their illness forever.
So sure,
if you have cancer there is something to overcome- you can have an ‘after’ where you are
cancer-free but for those with long term chronic illnesses there isn’t an ‘after’ but
there IS relief in accepting yourself as you are.
I used to feel like I was trapped in a body that I was constantly fighting against but
that I couldn’t tell anyone because all I got back was encouragement to keep going
rather than acknowledgement that the fighting itself sucked
just as much as what I was fighting against.
So you know what, even people who ARE ‘fighting’ cancer don’t want to be fighting all of
the time. They need a break. They need to be able to just complain and have a big moan
without needing to be ‘inspirational’ or putting lots of effort in.
It just... [frustration noise]
A lack of personal acceptance is bad for your mental health, we know this. Most obviously
we see it talked about in the realms of body acceptance around fat bodies or non-white
bodies but it’s important that we recognise how vital it can be
in disability and chronic illness circles.
Working to accept your ill body doesn’t mean that you don’t also have moments of
absolutely hating your illness or that you aren’t actively working to get better
(if that’s a possibility for you)
but it does genuinely help your soul to feel a little lighter.
When I thought of my illness as something to fight against what I was really fighting
against was my own body and thus stressing it further. My illness is in every cell, it’s
in my DNA, it IS me.
Often I see the argument, generally from the medical profession, that it’s important
ill or disabled people don’t make our brokenness our entire identity, that we don’t focus
too much on it, that we take it and separate it from the core of ‘who we are’.
- bingo if you had ‘identity politics’ on your scorecard!
But humans don’t work like that.
I don’t see ‘self’ as a pie chart in which what is ‘wrong’ with me sits separate
and alone from all other aspects of myself. I’m not 1/18 a redhead and ‘½ a Buffy
lover’. Instead they’re overlapping lines of the same length but varying opacity.
- And yes, I’ve had a lot of time to think about the visual representation of my ID,
I have to find ways to occupy myself when my migraines are terrible, okay?
I think the main reason I dislike the idea of being a ‘warrior’ and of ‘fighting’
is just that I really can’t be arsed.
It takes more energy to battle myself than it
does to let go and realise that some things are just never going to happen.
This is just me.
This is just how I am.
Granted, it’s scary at first- accepting you’re never going
to ‘get better’ is terrifying, there are a lot of possible futures you’re letting
go... but only by doing so do I see the possibilities that ARE in front of me.
Again, if you DO get something out of identifying as a warrior or a fighter then I in no way
intend to undermine that. ‘Go you’, in fact! It just leaves me cold.
Sometimes I’ll use hashtags on Instagram with ‘warrior’ or ‘fighter’ because
I like the community aspect and recognition that, actually, yeah,
yeah no...
My body doesn’t work properly. And it's freaking hard sometimes.
I completely understand the celebration aspect around being
a warrior, that you should be clapped for getting through those hard days. We become
accustomed to hiding our pain and the difficulties we face because living with a chronic illness
is a uniquely boring trauma. And using the warrior narrative means other people can’t
forget you’re still suffering. Warriors are heard. And that’s good.
I’m just saying… even if you put no effort into today,
you’re still valid and awesome in my eyes.
Living with a chronic illness is not a choice, it isn’t inherently 'brave' or 'inspirational'.
It’s just a life.
For me, giving up the fighting talk helped me to accept myself and my reality rather
than chasing after a future that got further away the harder I pushed.
People often ask me how to help their friends and loved ones who are ill. Well, one excellent
thing you can do is to not send someone back into battle, not tell them to ‘keep fighting’
but instead… to take a moment and really listen.
Thank you so much for watching this video. I hope it’s been thought provoking. If you’ve
enjoyed it and want to see more videos like this then subscribe to my channel.
I'll see you in my next video.
We'll just have to stop and start as we go...
[very intense drilling noise]
[Bloopers music]
Even tho this week was actually on Monday because I had a terrible migraine
Hope to see you this week...
Hi darling
Claudia: It's going to be 10m, they are doing a test hole.
Uh, alright fine. Stay there!
Hello lovely people!
Noo don't tell me you ran out of battery!
Oh frick...
Okaay
It's fine, it's just the third time that we've recorded this
Yeah, we are doing well people, we are doing well
Cool [sarcastically]
Let's go...
Hello lovely people!
Done!
Done or damn?
Now DONE.
Yes sorry, actually DONE not DAMN!