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!