Visible Illness

This isn’t a normal campaign. I’m not asking you to donate money, time or to give up anything that is precious to you. I am only hoping that in time you might choose to.

Invisible illness sufferers often seem ‘healthy’ or ‘fine’ to look at. Our awareness weeks and days come and go and a frustratingly huge number of people simply scroll right by the posts showing a smiling young person with friends in one image next to another in a hospital bed, unable to lift their head from the pillow. What’s the twist? Both photographs show the same person. A ‘before and after collage?’ you ask. Maybe, maybe not. The smile and dim party lighting in the first photo could easily be concealing the pain that is evident in the second. But then you’d know that already, if you hadn’t scrolled by.

I want you to stop. We can’t force you to. We can’t force you to pay attention to the charities helping people like me because there is no one else willing to. That’s what this is about. We can’t force you to see the invisible but we can persuade you to notice us, so that we become visible again.


Everyone who is suffering, I am asking you to get involved. I want to take as little of your limited time and energy as possible so have written ideas into this post and linked my short tutorials. Anything will be an amazing help, anything from painting your entire face with bruises to sharing someone else’s post and maybe telling the world why you are not well enough to make your own. Anything to try and make your pain visible, showing how the world sees you compares to how you truly feel. I have made two short tutorials, one is for doing your ~~hand~~, one for your ~~face~~ so you can choose. Post a photo, anywhere between now and the end of the month and write how the world sees you, verses how you really feel. For me this might be ‘When I go out people see me as a polite, smiling teenage girl. I now use a wheelchair but have had comments like ‘hope you get better soon’ from strangers because of course I look too normal to be a long term wheelchair user! Little do they know that in reality I appear happy because this could be the first time I have got out the house in a month. Because I’m trying to take time out from the constant pain of living with my chronic invisible illnesses…’ Then tag #visibleillness (and @ visibleillness if on Instagram) along with things like #Halloweenmakeup or #scarymakeup and other ‘healthy person’ hashtags in the hope that they will stumble across our posts and choose to keep reading when they realise this isn’t just about Halloween.

Everyone who is looking on, who can not yet see us, I ask you to consider the last time someone took something you said the wrong way. Maybe your facial expression gave the wrong impression? Or maybe the way you look, your tattoos or quirky style, makes people quick to judge or dismiss you. Think how you would feel if the looks they judged you by not only made them file you under a false stereotype but caused the world to class you as invisible, to deny your pain, your real, physical, excruciating pain. To cause you emotional pain by calling you a liar and a fake, along with anybody else you knew who was suffering the same way. And those others? You most likely met them through social media after months if not years of struggling alone with no one who could even come close to feeling the things you felt.


I am diagnosed with ME, hypermobility and ALSG/LADDs syndrome. There are millions and millions of people suffering with the first two (the last is very rare). I have had ME since I was five and a half. YOU ARE NEVER TOO YOUNG OR TOO HEALTHY TO BECOME ILL.

Now add to those millions all the other invisible conditions out there. Are we a rarity? Or do you just choose to leave us out of you mental picture?


This isn’t a five minute thing. No matter how long it takes, how much I have to write or how many people tell me it’s not worth it I will continue. Join in. What’s that? You are healthy so this isn’t your fight? For one thing it could well be your or your loved ones’ future, and for another; is feminism a ‘woman’s problem’? If men simply ignored the pursuit of rights for women we might not have any. Why not have some fun and make yourself a far more original Halloween costume than a ghost or catwoman? Imagine what a great conversation starter it could be? ‘What are you?’ ‘A zombie.’ ‘Oh okay.’ verses ‘What’s your costume?’ ‘Well I’ve been doing some research lately and…’



The world changes slightly every second. So why is making a positive difference often considered so unrealistic? Think about it; a new product is introduced on to the market then -be it anything from a lipstick to a novel- you are aware of it. If you choose to see the adverts and social media reviews you are aware. You barely notice it but that has made a difference in you life. Maybe you now want to read that book, for example. All I ask is that you choose to be aware, choose to notice that girl who fell and dropped all her things- maybe she’s clumsy or maybe her legs gave way beneath her. Choose to notice the boy in your office or classroom who always looks tired and sometimes disappears for days or weeks at a time, yes, he might stay up late and go to too many parties or he could go home every afternoon, collapse on to his sofa and cry with pain until he falls asleep without even the energy to put a meal together. Choose to see us. Maybe then you will be one step closer to believing we really do exist.

The photograph is of me. Do I look sick? Think about it.

The moment you choose to see us is the moment we stop being invisible.



This is one of my favourite photographs of me. My hair was working with the wind to spoil any posed shot and in the end I just laughed. That’s a happy memory but it doesn’t tell you that I only spent about half an hour there and the rest of the day was divided between two beds; one in my bedroom and the other I now have in the living room.



One thought on “Visible Illness

  1. I love this Sakara! I think able-bodied people choose not to see us because they don’t want to know – they don’t want to know that life can really be that bad, that people can really be that sick without seeming so, and that some people will never get better even if they do all the “right” things. It’s a form of cowardice, really.

    Liked by 1 person

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