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.

5 comments

  1. There was really nothing mini about your stroke, I love your positivity though, sure it fucking sucks, but you are picking out the positive and refusing to become the label your illness places onto you. Totally inspiring!

    Erin || MakeErinOver

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  2. Brilliant post, Issy. I know what you mean about competition around who is most ill/whose life is most affected etc. Some people wear the label, others fight against it. Each to their own. Just focus on you and your life xx

    Beautylymin

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  3. Your outlook and attitude is so inspiring, as are you. I never get over how incredible you are.

    https://littlemissmelanie.com/

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  4. This is brilliant and completely refreshing to read xx

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  5. 21? You look about 18, Issy. Good blog!

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