Famous singer and songwriter, Sia, speaks out about her life with chronic pain, neurological disorders, and Ehlers-Danlos Syndrome (EDS), and the spoonie community offered support and love.
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 fucking hard. Pain is demoralizing, and you’re not alone.
— sia (@Sia) October 4, 2019
EDS is an umbrella term for a collection of connective tissue disorders that are commonly caused by genetics. While they vary in both symptoms and causes, EDS is known to cause joint hypermobility (joints that pop out of place too easily), skin hyperextensibility (skin that is too lose), and tissue fragility (skin that tears easily). Living with EDS has its complications, and you can read about real-life struggles it causes right here.
Sia is known for her hit songs and eccentric outfits, like the two-tone wig that covers her face. She has made it a point to stay out of the spotlight. In an interview with Chris Connelly on “Nightline” in 2014, Sia mentions that she doesn’t want to be “famous or recognizable.” Despite her goal of keeping her personal life out of the spotlight, Sia stepped forward to discuss her struggles with chronic pain and illness publicly via twitter, and the spoonie community is here for it.
Keep up the good fight girl! I fight every day and beat being home bound after 7 years! Finally living a life I had to carve out on my own! #ChronicPain #fibrolifefree #homeboundhell #grateful #livelifetothefullest #thankful
— Annetastic MSFT (@yeeha234) October 7, 2019
Umm I didn’t know Sia had my condition.. nobody ever talks about ehlers danlos.
— kenzie Cormier (@Icehockeygoalie) October 4, 2019
EDS is a rather rare disease. According to the NIH, the combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. Because of the rarity, the EDS community has adopted a Zebra mascot to symbolize the community, due to the phrase taught to medical students, “When you hear the sound of hooves, think horses, not zebras.”
In medicine, the term “zebra” refers to rare conditions. Doctors train to find the easiest, most straightforward cause of a problem. Doctors use this tactic to avoid misdiagnosing patients and needlessly treating them for rare illnesses. Although the medical community may be right to use this tactic in most cases, it can also make getting a diagnosis harder for those who are actually suffering from a rare disease.
While the reaction has been positive on the whole, Sia’s following had mixed feelings about her original tweet. She mistakenly implied that EDS is a neurological disorder, which is a common misconception. Sia later sent out a tweet correcting her original statement and acknowledging that EDS is not a neurological disorder.
Sia, I’m so sorry you are suffering from EDS. You’re not alone—there are many of us here! But I’m sad that your brave admission could have been a prime opportunity to spread awareness about EDS, but by saying it’s a neuro disease, now we have even MORE misinformation spreading.
— Shelli Meyers (@shellimeyers) October 5, 2019
Just to clarify, I have a neurological disease AND ehlers danlos. EDS isn’t a neurological disease.
? sorry for the confusion.
— sia (@Sia) October 7, 2019
In addition, Sia addressing the limited healthcare resources available to others are struggling with chronic pain.
Oh yeah, herniated c6-7 c4-5 and cubitle tunnel syndrome.
no STDs, which frankly, is miraculous given my twenties. so… Plenty of people suffering more than me. At least I have resources. I really feel for those struggling w/the healthcare system. KEEP GOING!
— sia (@Sia) October 7, 2019
Sia may want to stay out of the public eye when it comes to her personal life, but it looks like the medical zebra community is excited to have a new advocate on their side.