I was diagnosed with lupus (SLE) in 2012 at the age of 20. After suffering a week’s worth of consistent migraines, I wound up in hospital. Initially I was diagnosed with a blood clot on my brain, but later they realised it was a large amount of inflammation/swelling, but they still weren’t sure of the cause. Many invasive tests later and a 2 week stay in hospital, I was diagnosed with lupus. I was relieved I didn’t have a clot, or tumour, so was quite naive in thinking I could just go home take my medication, and that I would be back at work within the week or so. My diagnosis was fairly ‘smooth’ compared to others, but I wasn’t really prepared for what was to come after…
So what is lupus?
Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Your joints, skin, kidneys, blood cells, brain, heart and lungs can all be affected.
But lupus is so much more than that. Lupus doesn’t just dictate your physical wellbeing, it dictates your way of life. Lupus decides if you have a social life after work or a Saturday night with your friends, or whether you stay at home dosed up in bed with your V shaped pillow (your new best friend).
Lupus decides if those friends stick around after the first few months, or if it’s too much to handle.
Lupus decides if I hoover or make lunch, because I don’t have the energy for both!
Lupus is having to choose your career path around your health.
Lupus is being discriminated against at job interviews.
Lupus is looking so well and healthy, when inside your body is doing everything it can to make you feel awful.
Lupus is knowing that the majority of the time, the pain I am feeling isn’t actually doing any damage to my body but that doesn’t bring me any comfort.
Lupus is also knowing at the flick of a switch, it can attack my organs.
Lupus is knowing it can affect my chances of starting a family.
Lupus is rattling like a pill pot and having infusions every 4 weeks to make me feel ‘ok’.
Lupus is knowing that I am not alone in this fight.
Lupus is knowing that I am fighting a battle that will never end, but I do it because I know there will be better days.
Courtenay 💜
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