Lupus Awareness Month: Lily’s Story

I found out that my friend had been diagnosed with Systemic Lupus Erythematosus (SLE for short) about a month and a half ago. Lupus is an incurable auto-immune disease that can cause inflammation and damage to organs and joints. Many people around the world suffer from Lupus, however lots of people are still unaware of the effect Lupus has on those diagnosed with it. I’m here to shed some light on what it can do to people and those around them. For the sake of my friend’s privacy, I’ll refer to her as Emily.

Probably one of the hardest moments for Emily, was realising she wouldn’t be able to dance for a while. She’s a professional dancer, and was about to tour around Australia when she was diagnosed. She unfortunately had to drop out because it was too much of a physical toll. It’s heartbreaking knowing she can’t go out and experience her dreams.

She is without a doubt one of the strongest people I have ever met in my life. It sounds cliché to say, but I mean it with 100% sincerity. She suffered in silence with the disease for a long time, and it’s only this past month and a half that she has begun to seek support from others. One thing she has been on adamant on since her diagnosis, is not losing her will to fight and remain positive. Her eternally positive outlook on life is so inspiring to see, and I do all I can to encourage it.

I have the misfortune of living a 4-hour plane ride away from Emily. This makes maintaining contact a little more difficult than it is for most and this sometimes leads me to worry. Recently, she disappeared for an entire month and I had no way to contact her. She didn’t go on Twitter, she didn’t respond to any texts, and I wasn’t sure what to do about it. I was very new to what Lupus could do, and had no idea where she had gone. Fortunately, she reappeared after 4 long weeks, and I discovered she had been hospitalised the entire time. For now, it seems to have become dormant, although it could flare back up at any time.

When Selena Gomez cancelled the rest of her ‘Revival’ tour dates, I cheered. I cheered because she took care of herself, she showed the world how serious Lupus can be and she showed others with Lupus that it’s ok to put their health first. Emily has drawn so much of her strength from the example Selena set, and I can’t thank her enough for giving her that strength.

Lupus Awareness Month: Lily's Story 1

I am in no way an expert on Lupus yet, or how to deal with it, but I do have some advice for friends of those diagnosed with it.

Stay Informed

It’s important to understand what your friend is experiencing and to be ready for what may happen. It takes away some of their burden knowing that someone is aware of what is happening to them. If you want to read up about it, check out the Lupus UK website. They have all sorts of information about what it is and how to manage it.

Check In

The effects of lupus can fluctuate very rapidly. Some days it may be completely dormant, other days people can end up in hospital in need of treatment. Even if you just send a quick message asking how they are, it makes all the difference. It reminds them that they aren’t alone, and keeps you up to date with their progress.

Offer Support

It’s an immense burden to carry, especially alone. Whilst you can’t carry it for them, you can be there when they need you. Lupus can be very isolating for those diagnosed with it. They may forget how amazing they are some days, or they may be so physically exhausted that they can’t be bothered fighting anymore. No matter what it is, you need to be there to try and help them through.

Remind them of their strength, keep them fighting and do what you can when they’re struggling. Lupus doesn’t just affect people physically, but mentally too, so make sure you’re there to keep them positive.

Lupus Awareness Month in the UK is all throughout October, so to keep up to date with various articles we make in honour of it, follow us on Twitter @CelebMix 


Written by CelebMix