I’ve been posting on my Socials for nearly two years now, the time has literally flown by! I remember starting out and thinking ” I’m going to use this platform to help others in the same position as me” I wanted to be someone who spoke out about their “invisible illness” not hide it away like some dirty wee secret.
So what happened? Well two years on and I’ve only just posted my first Lupus Skin photo. I got so caught up in creating the ‘Perfect Feed’ that all thoughts of showing, talking and being real went out the window. Don’t get me wrong it wasnt about photo shopping and editing my pics, No I was just becoming another makeup page in amongst the billion other makeup pages.
If I want my page, accounts, channel to be about “Real Beauty” then I have to show the good, bad and ugly side of me. My illness is invisible most of the time and unless you live with me you’d never know if it was affecting me on that day. The thing is, this is the way I like it. I’m stubborn, hard headed and like to just get on with things but I’m learning that if I want to help people then I need to open up, share my “bad” days and that’s why I posted my first “Butterfly Rash” comparison photo. I actually felt sick when I was writing the post but knew it was the right time for me to do it. I always get compliments on how amazing my skin is and how clear and “porcelain” like it is. Crazy isn’t it when you look at the photo?
The photo shows my Lupus rash at the beginning of it’s development, the marking on my eyelid is part of the same rash, it’s mostly from swelling. This is causing the deep line in my face too.
The rash is not permanent for me right now, it comes and goes. for some people they are actually living with this or worse permanently. I feel really fortunate, don’t get me wrong I don’t always feel that way. There are definitely times when I look at it. when it’s burning, itchy and swollen and I just want to scratch it off. There’s no treatment other than steroids or this, which I take anyway so it’s just a case of ride it out. I’m really picky with skincare and always make sure I don’t introduce any new products to my skin if there are any signs of my rash. Using natural and cruelty free products helps too as I know they are free from all harsh chemicals.
I am not allowed in sunlight UVA/UVB and have to be really careful with certain lighting, like shopping centers and large buildings like Hospitals ( ironic ) because of the bulbs they use as it can cause the same reaction in my skin.
Your probably thinking “Poor T, no sunlight!” but I’ve got used to it now and I have lots of little tricks to help make the sunny days easier……………
This is just the first post in my “invisible illness” diary that i am going to share with you,