But you don’t look sick.
A sentence that I am yet to determine as positive or negative.
My illness is completely invisible. Unless I tell you, you know me or you’ve kept up with my Instagram, then you wouldn’t have any idea that I’ve been a complete mess for the last year. You wouldn’t know that my day starts and ends with taking millions of pills to keep me functioning, you wouldn’t know that I’ve spent 80% of my time in hospital, or the pain I’ve been through over the last year.
It is photographs like this that make me think about those five words.
Here all you see is a perfectly normal 20-year-old on holiday, smiling away. To the naked eye I don’t look any different than any one else my age, but there is a story behind this image. Even though I do love this photograph, this was a holiday I had to go on purely to get away from the fact my health had relapsed. I needed a break from spending all my time in hospital or in bed, and it was the perfect escape to leave all the illness and hospitals behind.
What this photo doesn’t show you is how I actually felt that day.
I’d spent my morning trapped in the bathroom, feeling like my whole body hated me. The gold pouch I’m holding is my medication bag with all my drugs for that morning. My sunglasses hide a sleepless night, and the smile covers up the fact I was very uncomfortable all day. What you don’t see is that I was still on horrible steroids with a very puffy face, ridden with acne and very sore. And the hat I’m wearing is purely to cover up some serious hair loss, that is leaving me with balding patches and a very sensitive scalp.
Even though all of that is hidden, it does show the person I wanted to be that day.
I felt so awful that part of me is proud that you can’t see all of that pain. I’m proud that I can look at that photograph and the last year of hospitals, drug therapy and stress isn’t written all over my face. But this is where I struggle with comments like ‘’you don’t look ill’’. I know that sometimes it is a testament to my strength; I can go about a normal-ish day like everyone else and the world will be completely none-the-wiser of everything I’ve had to go through. But then it can also make the UC very difficult to live it. It can force everyone around me (and myself included) to forget that I still haven’t heard the golden word (remission) from my consultant yet. Still battling this illness head on, with every possibility of things going south again.
The world doesn’t really know what to say or how to deal with invisible illnesses, they either do or say the wrong thing. I guess to some people comments like ‘’you don’t look ill’’ can be a compliment, but to others it can actually hurt to hear those four words. I believe that it’s an acknowledgment that I’ve been through a lot, and it isn’t written all over my face. It shows that I have the power to fool the world into thinking I am a normal 20-year-old (when I’m proud to say that I’m not). I can now look in the mirror and see someone who has been to hell and back, and be proud of what is staring back at me. It is a testament to the strength I have within and it is a portrayal of how you can turn illness into something beautiful.
My illness might be invisible but I am surely not.