On Friday, internationally renowned singer-songwriter Sia tweeted, “Hey, I’m suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going. Life is ******* hard. Pain is demoralizing, and you’re not alone.”
This is the first time Sia has revealed her rare disease, something that can be very personal for people. It is not minor for her as she reveals in the tweet. It is taxing, ‘demoralizing’ and she describes it as suffering.
Ehlers Danlos syndrome is an umbrella term for a group of inherited connective tissue disorders which tends to affect the joints, making them extra flexible. This results in misuse of the joints, over extending and dislocating, which in turn creates joint instability, chronic pain, at times early arthritis. It additionally also is known for the characteristic stretchy skin, which tends to bruise and wound more easily or have difficulty healing. EDS encompasses 13 different versions of the disease which result from at least 19 different gene mutations, the diseases categorized by what part of the body is affected. Different versions may affect the eyes, the spine, cause poor muscle tone, and delay an infant from developing early motor skills like sitting or walking. For serious cases, there is a risk that the weakened blood vessels or organ walls rupture or cause internal bleeding, which can be life threatening. The severity of the disease has a wide range, from barely noticeably to incredible pain.
Sia, an Australia pop singer, has gained international success both from her own top hits as well as writing for top artists including Beyonce, Britney Spears, Rihanna, and many more. She is relatively private with her life, keeping her face and body mostly covered in wigs and clothes in public appearances. However, she has been open before about having hyperthyroid disease, and her alcohol and drug issues with Vicodin and Oxycodone. Her decision to publicly discuss her disease was not due to pressure to speak out since it is an ‘invisible disease’ not obvious to the naked eye or even to many doctors.
For this reason, EDS is known by its symbol the zebra. Zebras are not a common creature unless you come from specific parts of Eastern and Southern Africa. So people would not usually assume an animal to be one were they to come across zebra tracks or teeth or evidence of it. The zebras first characteristics may seem very similar to the horse or a donkey, and since it is not common, it may not come to mind. This is how EDS is. The disease is uncommon and many doctors do not know much about so it is frequently mistaken for other illnesses or not recognized at all because the different symptoms vary and could seemingly be unrelated.
Fans and EDS patients have reacted with appreciation for Sia’s openness as well as putting EDS into the spotlight for a moment in case it helps this invisible illness get seen.