“But you look so well!”: An insight into the lives of the ‘Invisible Illness Club’

Brave face, big smile and ready to take on the day. Ish. Having a long to-do list, not a moment to take a breath. All the while looking like you’re ‘winning at life’, strong and nothing bothers you. Truth is, the struggle is right there, but just hidden under an invisibility cloak that only you can see through.

Those of us in the Invisible Illness Club know that the most common thing, and most annoying thing, said to us is: “But you look so well!” Yes, on the outside, when I’ve caked my face with makeup, and managed to hide the dark circles under my eyes (which are only there because I have been up all night in pain). There is no way of calling in sick to work and saying, “Sorry, I can’t come in today, because although I look and sound okay, my insides feel like tiny men with knives and a vendetta are having a party. Yes, it’s been like this for a week but each day is different.”

One of the hardest things is having to explain your condition. You end up feeling like a consultant, throwing out all this technical vocabulary to only have people stare blankly back at you. Because it can’t be seen on the outside, it is almost impossible to explain what you are feeling. It almost as though no illness can be real unless you can convince others that the pain is there.

But how? How much do you say? How can you explain yourself without anyone jumping to conclusions, thinking you’re looking for sympathy, exaggerating or just making it up? One second you may be dancing around, drink in hand and laughing and the next you may not be able to stand. It makes it all seem unreal – how can you be unwell when you seem so okay?

Whatever the illness, visible or not, it is there. It is part of you and having to live with it every day makes it part of your life.

Most of us living with a hidden illness, day in and day out, don’t look any different from a completely healthy person. There is absolutely no indication of it just by looking, but it is still there. Being repeatedly told, “You don’t look ill,” comes with a wave of guilt. Are we not living up to what people expect of us? It can drive us to take on too much, despite our ill-health, and consequently end up worse off. The world around us teaches that there is no time to be unwell, as we will miss out on opportunities, particularly those in the working world, and those studying.

The best thing we can do for ourselves is to accept that some people may not understand our illness, no matter how much we try to explain. This inability to understand is on them and not on you.

The struggle is there, it is a hard and unseen fight, but you are winning.

“She was always fighting a battle, but her smile would never tell you so.”

Nikki Rowe (ww.nikkijadecollective.com)