At 19 years old, I didn’t know this day existed and I didn’t know much about Lupus in general despite my own father having it. I knew he had it and I knew it was something to do with the immune system but that’s as far as my knowledge went.
At 20, I woke up with a rash on my right cheek. I thought it was an allergy to something. I took an anti histamine and thought nothing more of it, I trusted it would be gone in a day or two. That afternoon I suddenly became unwell with an achy body, joint pain and severe fatigue. My friend forced me to a doctor where I was told I had a virus. I walked back into my house under the pretence that I had a virus and would be back to my normal self in the coming weeks. I fell into a deep sleep that lasted over 20 hours. It wasn’t a virus, it was Lupus greeting me and as I slept nearly a day away, it was ravishing my body.
To sit face to face to a doctor and hear the words “there’s no cure” is soul crushing. I was confused how I went from healthy to incurable in a matter of months. I couldn’t make sense of it and the more I thought of it the more angry I got. Every question I thought of asking had no answer. One day I was fine and perfectly healthy and the next I’m sick with an incurable illness. I spent weeks refusing to believe it, despite my mind making a connection with my body and realising something had gone terribly wrong months earlier to my diagnosis. I wanted to scream at my body to reverse the irreversible. It was like being under murky water, I couldn’t find a way out and I was drowning in fear.
4 years later, I still don’t know why or how and I will more than likely spend the rest of my life wondering why. It’s infuriating to live with a disease that has no answers to my questions. I will never stop being grateful to the scientists and doctors researching Lupus so that one day I might recieve a concrete answer. I will always be thankful for my family, boyfriend and friends who stand by my side through it all. I will always be thankful that during my Lupus journey I have met others living with chronic illness who understand me. I look back and realise I handled it and myself well when I was thrown onto an unknown path but it didn’t take me long to find my feet in my new world.
At 24, I’m grateful for this day. A day to talk about the disease that is unknown to the majority but has destroyed so many lives. Today, on World Lupus Day, please talk about it. Talk about Lupus, tell people what it is. Help us raise awareness for a disease that has taken so much away from us. Let the world see and know about Lupus, stop letting it hide.
Me, myself and Lupus 