How to handle the glamorisation of invisible illnesses
14 July 2019
AD | Tshirts were gifted by Invisible Merch
Here’s one for you, I didn’t think my stroke was that serious because I was in the acute stroke unit and acute angles are small so my stroke must’ve been too. When I tried to explain this to my mum she called me knobhead for being so thick and an extra knobhead for having a stroke.
Since being diagnosed with Antiphosphilipid Syndrome (that I can now proudly pronounce) I’ve had loads of people reach out wanting be Hughes Syndrome (that’s what the cool kids call it) mates and share symptoms and stories etc. Some of these people have been amazing at reassuring me and when I was still very anxious and unsure of what to do with myself and others have been well, to put frankly, so negative that they might as well have started planning my funeral.
There’s something about the invisible and chronic illness communities that, as someone who now has an invisible and somewhat chronic illness, really puts me off giving myself these labels and that’s because of the culture that is adopted by some people when they wear their “illness badges”. I have no shame in my syndrome, if you’re a regular around these parts you’ll have witnessed how candid I am about my health from infertility to stroke recovery I’ve been open, frank and factual about diagnosis, prognosis and recovery and time and time again I’ve been praised and commended for my upbeat and positive response to all this shite that my body has been chucking at me over the past few years.
I’m not about to toot my own horn and claim that I have some super positive mindset or, have a pop at people who can’t be positive about their situations because when I was lying in a hospital bed, watching P who was so damaged because of a stroke repeatedly be unfolded by nurses because she couldn’t physically hold herself up, you can imagine that I wasn’t feeling particularly bright and sunny about my future and for a long time after my stroke it did consume me, it had taken over my life and I there wasn't a moment when I didn't think about it.
Whilst I wear my stoke badge with pride and will always strive to raise awareness and money as well as share my Hughes Syndrome and warfarin stuff; I point blank refuse to let my immune system’s shortcomings consume me. I don’t want to count spoons, I don’t want to complain about the things I can’t do anymore and I certainly don’t want to slate the medication that’s keeping me safe, this is my new normal and the fact that I'm still alive and able to be the afore mentioned knobhead is enough for me.
Hear me out here, I’m not having a pop at people who are consumed by their illnesses; I don’t blame them. When you’re constantly battered by symptoms and struggling with your life it’s hard to not be consumed by it because it has taken over.
I fully acknowledge that I’m privileged (and lucky) enough to still be able to live a relatively normal life, almost close to my old one and still far enough to sometimes make me sad, but in all this I refuse to let it get to me because I'm fortunate to be able to choose not to. That being said, I’m invisibly ill enough to understand the need for people like to me be advocated and represented; when I first attended the warfarin clinic the nurse was adamant that I had attended the wrong clinic and it wasn’t until I pulled out my warfarin book that she realised that although I’m only 28, I do really need the medication, please hun. I’ve had people scoff when I blame brain damage for a blip in my memory or a delay in my speech as though I’m joking (although I have used it to get out of trouble too many times already); I can’t tell you how many times I’ve had to explain to people why baby number two won’t be coming along just yet, aside from the fact that my body would like to get over the stroke first, there’s the addition that the main side effect of Hughes syndrome is miscarriage and still birth and warfarin and pregnancy are not mates at all.
As well as looking 21 (humour me) the fact that “I don’t look ill” doesn’t help when I’m trying to explain how some of my brain is dead and my blood is stickier then a toddler’s hands after lunch, numerous people have tried to palm my stroke off as a mini one based on the fact that I’ve made such a good recovery and this pisses me off no end. Give it the credit that it deserves, I haven’t been unable to wink with my left eye for 5 months for it to be brushed off so easily. If I tell you that I had a big bastard stroke, accept it. The lesson here is to not make assumptions about someone’s health, if they tell you that they’re unwell, don’t try and lessen the severity of what they’ve said...invisible people need to be heard.
On the other hand, the raised awareness of invisible illnesses and mental health has had a negative effect on itself in the sense that conditions and terms have become somewhat glamorised. The lines between feeling anxious about a specific instance and suffering from anxiety have been blurred and because we have to tread carefully, we can’t call this behaviour when we see it because, (in my own words) we shouldn’t “lessen the severity” of what someone had said. It’s hard when some people come across as though they’re almost relishing in being unwell, when they’re listing symptoms as though they’re achievements or desperately trying to self-diagnose in a bid to be the sickest. Often the loud voices of these kind of people are drowning out the quieter voices of the folk who really could do with being lent an ear and that's why I'll always strive to raise awareness despite my conflict because P in bay 16 on the acute stroke unit didn't have a voice, and I do.
This behaviour causes people to lack patience and sympathy with invisible illness awareness and consequently not be open to understanding people who are suffering, coping and getting on with it. So what we do? The obvious answer is be kind, regardless; because after all, if you have a need to lie about being unwell....you’re already there.
The T-shirts I'm wearing in these photos are from Invisible Merch, where25% of profits will be donated to a charity of your choice- Just type it in at the checkout! This is an amazoing opportunity to wear clothing promoting awareness of invisible illnesses as well as raising money for a charity of your choice.
The Hinch Hype and Feminsim
2 July 2019
There were two types of people on social media when Mrs
Hinch rose to fame, those who said "I've been using Zoflora alllllll my
life, it's nothing new" and the other people who went and bought crates of
it to stuff their Narnias with tonnes of cleaning booty. Hinch got people's backs
up, whilst the majority of people loved her content and wanted sparkling,
spanking homes a lot of people questioned her mental health and diagnosed her
with OCD, others called her sad and some said she was boring but she undeniably
has something, whether she's your cup of tea or not she's clearly liked enough to
gain so many followers in such a short amount of time and become a full-time
influencer, the job of the decade.
There are numerous arguments for and against the success and
popularity of this woman who made it to insta-fame and there are many different angles that
people go in at to tear her down or raise her up. Even my own stance on the
topic is ambiguous; in one instance I’m astounded and somewhat concerned that
cleaning could become such a trend but I’m also guilty of believing the hype.
12 weeks off work is long time and much like Mrs H’s claims, I found clarity
from post-stroke anxiety in falling into a rigid housework routine and found
myself even shoving tumble dryer sheets down the back of the sofa on one occasion…just
the one mind. I do have a barrsket that I shove my cleaning bits in and cart
around the house whilst getting the daily jobs done and I am liberally spraying
my soft furnishings with diluted Lenor more often than I’d like to admit but I haven’t fully jumped on the Hinch
bandwagon and that’s for two reasons;
1. I have this weird dislike of trends, you know that ‘it’s
cool not to find cool things cool’ attitude that people have? I’m of those
people; I try and tone it down because I’m a simple soul myself and don’t have
anything going on in my life to make me any less of a basic bitch than marble
Mary with her rose gold accessories and pumpkin spiced latte loving ways but I’m
just not quick to jump in on a trend in case it's not as cool as people first thought and then I can smugly declare how I never thought it was cool to start with when the hype dies down.
2. I’m not buying into the Gleam machine. I find there’s
something insidious about the affect that the management of some content creators has on them in the long term. I feel like individuals are milked dry upon discovery and
soon become slaves to their brand and forced to spiel out the same old content
until they’re (putting it bluntly) too old to get away with it anymore.
There’s been a shift in long term managed Youtubers who have needed to produce ‘more
mature’ content to suit their ageing and loyal audiences whilst remaining child friendly
enough to reel in new subscribers from a generation who don’t know life before Youtube and Instagram etc. To her credit Mrs H
does state in her book that she’s aware that’ she can’t ride the cleaning
product train forever and comments on numerous occasions that she wants to ‘stay
grounded’ and remain authentic but, how much authenticity can someone retain
when they become a brand?
From reading comments on her audio-book Facebook advert and
various tweets and Instagram comments a lot of people seem to be outraged about
the fact that she’s risen to fame for ‘just cleaning’ and when you think about
it, it is outrageous that chores that most of us undertake have been turned
into a brand with die-hard fans and given Mrs H an alleged net worth of £1m. I
think most of the outrage also stems from the fact that although it’s a ridiculously
simple concept, once it has been done it can’t be done again. Anyone attempting
to produce similar content will only be considered as a ‘Mrs Hinch rip off' and
accused of copying her content. This is something that the likes of Gleam will
have undoubtedly taken into consideration and thus allowing Mrs H to wear her
cleaning crown without threat for the foreseeable, I’ll be interested to see
how her content develops with time. As a follower I’m becoming less engaged
with the Procter & Gamble ads and I don’t need anymore tutorials on putting my
sink to bed but hats off to her, there’s still something preventing me from pressing that
Unfollow button and it’s curiosity.
The story of the down to earth commoner, woman of the
people, representing the working glass, girl done good story never gets
old. Look at Princess Diana and the Duchess of Cambridge; we were told and told
by the press over and over that these women were 'commoners', just like us (with
their aristocratic rich AF families and sickeningly expensive educations) and
watching them rise to the top engaged the world. The same has happened on an albeit
smaller scale with Mrs H, she is 'just like us', she has a quiet life, living
with her Handsomes and pottering about with Vera and Minkeh et al. Since
discovery, more of her story has unfolded and kept people hooked on the Hinch
Hype. For me it’s her health story, I also have a condition that makes my blood
clot more than it should and I’m on blood thinners for the rest of my
life and like her, when and if I get pregnant again I’ll be injecting myself
daily with heparin. Following her pregnancy and witnessing her appear to have
had a fairly easy time (all things considered) has given me a bit of hope and
that’s not something I don't want to be letting go of.
Emily Clark very recently argued in the S*n that “Housework
and women’s work have historically amounted to one and the same, and whether
she realises it or not, Mrs Hinch is spearheading that misconception” I can see where Emily is coming from with this point however, women and men
for that matter have progressed since the 40’s and Mrs H’s hubby is often seen
undertaking the hinching whilst Mrs H puts her feet up and relaxes, there
hasn’t been one instance where she said ever stated or implied that hinching is gender specific so should we be blaming Mrs H for women who choose to get on
the hinching train, taking on the majority of work with it?
Housework and 'womenswork' may be one and the same but
hinching and housework seem to be almost entirely different. Granted, they’re
the same tasks with the same outcomes but hinching is more of a way of life and
more importantly, a choice. Emily also said that not being able board the Hinch
bandwagon makes her feel like a failure she claims that “no matter how fun
hinching invariably becomes, it is still unpaid labour” I see the argument in
this however, someone needs to do it regardless of whether you’re jotting your
jobs down with a dimante-ended pen or not and no one is going to pay you for
cleaning your floor and no matter how much of a feminist you are, the patriarchy can't be blamed for your blocked bog if you're living the single life.
I also appreciate the fact that those fans desperately attempting to emanate Mrs H's way of life by following her routines, shoving wardrobes in their garages and making backwards hinch lists etc. may be shooting themselves in the feet when it comes to sharing the house/hinch work with their male partners, as cleaning has been transformed into a hobby and, hobbies are optional just like Xbox, football and watching people play Xbox on Youtube but where to we draw the line and stop blaming influencers and take accountability for ourselves? As a blogger it's probably odd that I'm uncomfortable with influencer culture, whilst I appreciate that people are influenced by what they see on social media and thoroughly understand ads and sponsored content, whilst influencers are being clamped down on by the ASA and CMA to adhere to strict rules to ensure they're not misleading followers, shouldn't consumers take some accountability and not be so easily influenced? (before anyone pipes up...no, this does not apply to kids, we're talking about grown ass women here).
No one is telling women who don't live in spotless grey and white themed houses that they're not good enough. More often than not my house has a whiff of cat piss, I haven't caught up with my washing ever and as I'm typing this I've noticed a slice of Nutella on toast (Nutella side down of course) poking out from underneath the sofa. I've hoovered up twice and washed up three times, I've folded laundry, sprayed the sides and my home still looks like 57 toddlers have had a rave in the living room and my kitchen could be featured on some kind of Channel 5 scumbag tennant exposé but do I feel like I've failed as a woman, mother and partner? naaah. Us womenfolk need to be as strong as our foremothers, y'know the ones who gave their lives for our rights, the ones who starved to death so we could vote. Stop allowing your worth as a woman to be determined by the comparison of your home to another woman's on Instagram.
I'm still undecided where I stand on the hinch hype and rise of the domestic influencers; I'm kind of there, outside the party with my Minky in hand cleaning a bit but mostly watching and lurking, waiting to see what happens and staying enough distance away so that I can shove my minky in pocket and smugly declare that I never thought it was cool anyway when the hype dies down.
I also appreciate the fact that those fans desperately attempting to emanate Mrs H's way of life by following her routines, shoving wardrobes in their garages and making backwards hinch lists etc. may be shooting themselves in the feet when it comes to sharing the house/hinch work with their male partners, as cleaning has been transformed into a hobby and, hobbies are optional just like Xbox, football and watching people play Xbox on Youtube but where to we draw the line and stop blaming influencers and take accountability for ourselves? As a blogger it's probably odd that I'm uncomfortable with influencer culture, whilst I appreciate that people are influenced by what they see on social media and thoroughly understand ads and sponsored content, whilst influencers are being clamped down on by the ASA and CMA to adhere to strict rules to ensure they're not misleading followers, shouldn't consumers take some accountability and not be so easily influenced? (before anyone pipes up...no, this does not apply to kids, we're talking about grown ass women here).
No one is telling women who don't live in spotless grey and white themed houses that they're not good enough. More often than not my house has a whiff of cat piss, I haven't caught up with my washing ever and as I'm typing this I've noticed a slice of Nutella on toast (Nutella side down of course) poking out from underneath the sofa. I've hoovered up twice and washed up three times, I've folded laundry, sprayed the sides and my home still looks like 57 toddlers have had a rave in the living room and my kitchen could be featured on some kind of Channel 5 scumbag tennant exposé but do I feel like I've failed as a woman, mother and partner? naaah. Us womenfolk need to be as strong as our foremothers, y'know the ones who gave their lives for our rights, the ones who starved to death so we could vote. Stop allowing your worth as a woman to be determined by the comparison of your home to another woman's on Instagram.
I'm still undecided where I stand on the hinch hype and rise of the domestic influencers; I'm kind of there, outside the party with my Minky in hand cleaning a bit but mostly watching and lurking, waiting to see what happens and staying enough distance away so that I can shove my minky in pocket and smugly declare that I never thought it was cool anyway when the hype dies down.
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