Behind The Photo, Behind The Smile – Invisible Illness

Invisible Illness – But You Don’t Look Sick?

I look alright don’t I? Don’t worry I’m not giving myself an overegged compliment (although surely we should be down with that these day’s?!) I mean I look alright, healthy, well. What you don’t see is what is behind the photo and what it takes to put together a moment like this. Not just for social media might I add, but for life; as a Spoonie.


Yep, I’m a bad ass, Spoonie woman.


I look good. I mean I look at this picture and think ‘woah, I look ok!’, yet I know how I felt that day. I remember needing to lie down in the middle of doing my makeup because I began to faint.
Every action has a consequence.
This is something you learn early on in life with a chronic illness. So it is a process of preparation, coping, crashing and recovery. And it’s an endless cycle. Whether that’s with the smallest or biggest of acts.
I fake it till I make it.
I love makeup. No, I bloody love makeup. And while I yearn for the understanding of my invisible neurological illness, I know that to most I ‘look fine’. Even when I’m white as a sheet and have the darkest circles under my eyes. It still doesn’t represent the constant battle raging inside me.
Sometimes when I catch a glimpse of myself in the mirror I’m shocked at how ghostly I appear, others I’m surprised I can look so ok when I truly feel so severely ill inside.
Then there are my ‘best’ days
They don’t come around often at all. But perhaps on one of these days’ I might manage an activity so small to a healthy person, yet enormous to myself.
It will come at a cost of course, but I live for these moments (they don’t last a whole day).


I’m strategic. In everything. I have to be.


I think we all become like this. Our symptoms overwhelm our bodies so our plans and actions change. My strategies do also.
My makeup is natural but uber glowy. It is of the smallest effort physically, but impactful and the aim- to create what I lack, a healthy glow.
You’ll look at this picture and it may seem like a girl with a coffee.
But my hands were shaking with the weight, my back supported with cushions and it was seconds before I needed to rest.
The journey, a short walk for most, had been planned in the car, to drop me off at the nearest door, closest to the lift.
My handbag is my lifeline. Full with meds, noise cancelling headphones and so on.
The person taking the photo is my carer.
But hey, it’s a good photo 😉
The Aftermath
Of course, I would ‘pay’ for my activity, this comes with the territory. A payment of heightened symptoms that last a prolonged period of time.
My point is, there is always more to someone, to a situation, than is visible to the eye. We simply cannot judge on first impressions. I look healthy in this image however, I am anything but and this is true for many, many others. It is also true for lots of images of others we see on social media which is often a highlight reel for everyone.
Don’t feel pressured to be like another, or by social media in general. Think twice before making snap judgements.
More people live with invisible illness & invisible disabilities than not and when you consider how quick to judge we can be as humans, that leads possibilities to allow millions of people to feel alone and be discriminated against.


Let’s be kinder. Let’s think harder. Judge a little less and accept a lot more.


This week is Invisible Disabilities Awareness week.

Let’s try and be more accepting of others and their needs.  People with invisible illness and disabilities may need to:

park in disabled bays, use wheelchairs/walking aids, be unable to work, require help around the home, have fluctuating and debilitating illnesses, require access to disabled toilets and much more. Most of all, their illness and or disability is most likey not visible. You can help by not inflicting judgment and offering acceptance.


If you’d like to learn more about my personal chronic illness journey you may enjoy ‘Meeting my Illness Part 1 & Part 2‘ and more recently ‘A Year Of Survival‘.
Behind The Photo- A story of living with invisible illness and disability and how we as a society can do better in terms of awareness and acceptance.
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  1. I hate the “you don’t look sick” mentality. Thanks for helping to educate! Your words (and story) have a lot of power

    1. right? it’s so damaging. Plus all it shows is ignorance and a lack of awareness and understanding. Thank you, I hope that by sharing it can help inform others and make for a kinder, more aware society.

  2. Very good post, that makes me think about real problems that stays behind our beautiful faces. Also, I am having illness and I am not talking about it. We all want to look strong, right? But if we will never show our wounds, no one will ever help. . and we will never be able to help others.

    1. Thank you. I’m sorry to hear you are suffering. Yes, we all want to appear strong don’t we but you’re right at some point we have to reach out for help. Speaking about it is one way we can get help for ourselves and support others going through similar things also. Sending understanding hugs your way.

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