In a message posted to Twitter on Saturday (4 October), Australian singer-songwriter Sia opened up about being diagnosed with Ehlers-Danlos syndrome, and shared a powerful message of support for anyone living with chronic pain.
Although she prefers to keep herself out of the spotlight for the most part, on the rare occasions when Sia steps in to the spotlight to share a personal part of herself, it’s usually for an inspiring reason.
In 2017, the popstar took to Twitter to respond to people selling a naked paparazzi shot of her online by simply sharing the photo in question, adding the caption: “Someone is apparently trying to sell naked photos of me to my fans. Save your money, here it is for free!”
And just one month later, Sia shared a column which questioned whether it was ethical for her to use child-star Maddie Ziegler as the face of her operation, admitting that it is a decision she grapples with “often,” and sharing that she asks Ziegler “weekly” about whether she still wants to work with her.
Now, in a powerful message of solidarity again posted on Twitter, the singer-songwriter has opened up about another side of her personal life: her health.
In a statement posted to Twitter on Saturday (4 October), Sia revealed she has been diagnosed with Ehlers Danlos syndrome (EDS) – a connective tissue disorder that causes chronic pain.
“Hey, I’m suffering with chronic pain, a neurological disease, Ehlers-Danlos,” she writes. “I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going.
“Life is fucking hard,” she continues. “Pain is demoralising, and you’re not alone.”
The Australian star is not the first celebrity to open up about their experience with EDS. Last week, actor and former Stylist guest editor Jameela Jamil took to Twitter to share the reality of her EDS diagnosis.
Sharing a picture of her feet, Jamil wrote: “An EDS thread. EDS is having to lie with your legs above your head every evening because of the pain and swelling from being on your feet. What is your EDS experience?”
In response to the tweet, many of Jamil’s followers began sharing their experiences with the condition, which affects approximately 1 in 5000 people worldwide, according to the US National Institute of Health.
People living with EDS often describe themselves as “zebras” due to the rare nature of their condition. The nickname refers to a phrase which is commonly taught to medical students during their training, “When you hear the sounds of hooves, think horses, not zebras,” which prompts them to assume common conditions before they jump to a rare diagnosis.
According to the NHS website, EDS diagnoses are a group of “rare inherited conditions that affect connective tissue”. There are several forms of the syndrome, including Hypermobile EDS, Classical EDS and Vascular EDS. Common symptoms of the syndrome include joint hypermobility, stretchy skin or fragile skin that breaks or bruises easily. Many of the symptoms therefore lead to chronic pain for sufferers.
To find out more about EDS, you can check out the NHS full profile here.