How Sia's Opening Up about Ehlers-Danlos Syndrome Has Helped Me

 

On Friday, October 4, Australian pop singer and songwriter Sia opened up about having Ehlers-Danlos Syndrome (EDS) via twitter. Stating “Hey, I'm suffering with chronic pain... 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 (bleeping) hard. Pain is demoralizing, and you're not alone.” 

EDS is a connective tissue disorder that affects roughly 1 in 5000 to 20,000 people worldwide, depending on the type. There are 13 different known types of EDS, with the most common two being Classical and Hypermobile. EDS has been classified as a rare invisible illness but specialists believe it might be a much more common condition than previously believed. Many patients simply have never been diagnosed as the range of symptoms and the type of EDS can affect patients very differently. The mascot of EDS is a zebra because med students are taught that “when you hear hooves think horses, not zebras” as in to look for a common diagnosis, but this discredits the fact that there are actually zebras out there (ie us with rare disorders). Sia talking about EDS affects me personally because I too suffer from this medical condition.

I was diagnosed with Classical Type Ehlers-Danlos Syndrome when I was seven years old. My case is fairly unique given that no one in my family has EDS and I was clinically and diagnostically diagnosed so young. It generally takes 10-20 years to get a diagnosis of the condition and many people are left without a diagnosis well into their 40’s. Being diagnosed at a young age was probably one of the best things to happen to me in regards to EDS. It provided an answer as to why I was so accident prone, why I was constantly getting bruises and cuts requiring stitches when I wasn’t being any more reckless than the next kid. I understand why I have 20 different scars on my body and I understand that my pain is chronic and persistent and will be with me for the rest of my life. I know that what I am going through is real and not just in my head. But for so many people, they are living with the symptoms without knowing that there is an invisible illness behind it. 

The first time that I met someone who also had EDS was my freshman year of high school when my assistant principal set up a meeting with a senior who had just been diagnosed. Before that encounter, I had spent 7 years of my life feeling that I was the only one who had EDS. No one in my family had it, my classmates couldn’t relate to it, and for many doctors, I was the first patient they had seen with the medical condition. Four years later, I was the high school senior, talking with a freshman about her recent diagnosis of Hypermobile EDS. During senior year it was as if I was hit by a wave of new people in my life who were struggling with EDS. I joined a support group and found people of all ages who I could talk to openly about everything that I was going through with my pain and other symptoms. And then on the 18th of March this year, actress Jameela Jamil, known for her role as Tahani on NBC’s “The Good Place” opened up via an Instagram post that she has EDS.

I remember sitting in my math class, staring at my phone in disbelief. One of my favorite actresses had my medical condition. It was a small act on her part, but scrolling through the comments section I recognized just how significant it was for both me and other Zebras. A week later, Yvvie Oddly, winner of RuPaul’s Drag Race season 11, openly discussed her battle with EDS. She explained how her “joints pop out”, later adding, “Speaking about it even just briefly has opened me up to the fact that there are so many people struggling with this or with other invisible disabilities, and I never realized there was such a major community of people…We’re called Zebras. Thankfully, I’ve finally found so many fellow Zebras out there.” 

Yvie Oddly demonstrating how her skin stretches due to EDS

Yevei’s words ring true, there is so much power that comes from knowing that you are not suffering alone. I am so thankful to celebrities such as Jameela, Yvie and Sia, as well as advocates like Lara Bloom, International Director of the Ehlers-Danlos Society, who are opening the dialogue about EDS.

Bringing awareness and representation of EDS is probably the best thing that Sia and other celebrities before her can do. Informing the public about EDS not only helps people like me, it helps those who have yet to be diagnosed and for the general public to hear about a condition that is largely unknown. Living with an invisible disability is difficult, but I am grateful to be in a position where I can advocate on behalf of myself and share my story with others who might benefit from hearing it. The knowledge that there is a herd of other zebras around me is what helps me get through the bad days. 

If you think that you or someone you know may have EDS or would like more information on the different types of EDS and their symptoms, click the link below to the Ehlers-Danlos Society webpage. 

https://www.ehlers-danlos.com/what-is-eds/