Sia opens up about suffering chronic pain from Ehlers-Danlos syndrome

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I happened to be thinking about Sia yesterday because I was watching Peter Rabbit with family, and I commented that I loved the fact that Sia provided the voice for Mrs. Tiggy-Winkle. I’ve been a fan of Sia’s music for a while now, and appreciate that she seems to live her life on her own terms. On Friday, she opened up and shared with her fans a bit more about what her life is like. She revealed on Twitter that she has Ehlers Danlos Syndrome:

Sia is opening up about her health, revealing that she suffers not only from chronic pain, but a neurological disease as well.

The pop star shared the news with her followers on Twitter on Friday, saying that she wants others who suffer similarly to know that they do not suffer alone.

“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,” the Grammy nominee, 43, wrote in her Twitter post.

Ehlers Danlos Syndrome, commonly known as EDS, is a group of genetic disorders “generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility,” according to the Ehlers Danlos Society’s website.

Sia added in her tweet: “Life is f—— hard. Pain is demoralizing, and you’re not alone.”

[From People]

The article notes that Sia often tweets support to her fans, and so I hope that people who needed to see this tweet saw it. It made me feel a bit lighter just reading it. Celebitchy reminded me that Jameela Jamil also has Ehlers Danlos Syndrome, which she first addressed on Instagram with a video on February 16 of this year. I’m not very familiar with EDS, but am going to read up on it. I hope that Sia (and Jameela, too, of course) found it freeing and helpful to share their stories with fans.

People also points out that this isn’t the first time that Sia opened up to her fans about her health: She marked 8 years of sobriety on Twitter last year. Good for her. I hope that she has a great support system of medical professionals and loved ones. Pain management can be a moving target: I’ve dealt with that on-and-off in recent years. Just when I think I’ve found The Solution, the pain returns in a slightly different form, and I feel like I need to start from Square 1 all over again. I wish Sia all the best in her wellness journey. I hope that she’s able to figure out a pain management plan that works for her for a long time to come.

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37 Responses to “Sia opens up about suffering chronic pain from Ehlers-Danlos syndrome”

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  1. OriginalLala says:

    I follow a cat on IG who has EDS, his insta handle is @tummyandgummy. His caregivers talk alot about what life is like with EDS, it sounds like a very challenging illness to manage. Sending love to Sia.

  2. Kate says:

    I have EDS and it is so difficult. It’s so much more complicated than people realize too, it’s a connective tissue and collagen disorder that effects the entire body. It typically has comorbid disorders all because of the way connective tissue and collagen is throughout your body. It can cause POTS syndrome which makes blood pool in my hands and feet and there’s less blood flow in the brain and organs the longer were upwards, which causes terrible brain fog and digestive disorders. I have gastroparesis with a 13% emptying rate in my stomach. I’m awaiting 2 major hospital programs for care. The joint pain is so bad throughout my body that laying down at night it literally feels like my body can’t settle into itself because my joints are so loose. I’ve been on disability since April, and it’s a long frustrating path to diagnosis. Most of us are pinned incorrectly with fibromyalgia. I love Jameela and Sia, interesting to know!

    • Erinn says:

      I have so much empathy for you. I have fibromyalgia and migraine. The brain fog is REAL with conditions like this, and it’s SO difficult. I’m currently loaded in bruises because I’m in the midst of a flareup, and get clumsier during them. The digestive issues are especially depressing. I read the other day that when you have fibromyalgia with comorbid migraines the suicidal ideation risk is something around 60% with actual attempts a good chunk higher than the general population, or the population who has just one issue – and a lot of these people don’t have a history of depression to blame. And then some nights it’s just impossible to get comfortable because it can feel like my scalp is rubbing against sandpaper when I’m just laying on my pillow.

      Sending you so much love. It’s awful, and it’s unfair to have to deal with this shit. But I’m always amazed by how freaking strong people are who have to go through this kind of thing.

      • Kate says:

        Yeah I can understand those statistics. I’m a single mom so there’s no option for me other than to press on the best I can. I’m about to be 36 so I’m putting a lot of hope into there being better treatments before I’m 50+ and the pain is intolerable. There has to be a new medicine to treat severe pain naturally without opioid crisis effects. I don’t touch pain pills only flexeril and the “green route” with additional cbd combinations. I get migraines too, and since I’ve been home on rest they’ve been significantly less. They’ve tracked them since I was 12 with no patterns. I believe they’re from my pots syndrome and lack of circulation/ blood pressure issues and tachycardia because typically I was a highly active person with 10-14k steps a day at my job, and now I’m resting most of the day

    • Tanguerita says:

      Oh, Kate, you describing your pain made me tear up. All the best to you, I hope the hospital programs come through soon and it gets better.

      • Kate says:

        That’s very kind of you to say, thank you. There are people who have it even worse than me who can’t even walk from the pain so I always try to keep things in perspective that it could definitely be much worse

    • Frida_K says:

      Traditional Chinese medicine can do a lot for anyone with EDS. Acupuncture can help but it can be good to start with tui na (traditional Chinese bodywork therapy–it’s like massage and also similar to acupressure). Moxibustion (warmed herb therapy) is also an effective source of pain relief for EDS people. If you google tui na and EDS or acupuncture and EDS you can find some substantive resources.

      EDS is very hard to manage because each individual case is so very different and many general practitioner MDs don’t know how to correctly identify it. And finding one’s own individual pain management/wellness support team is a challenge, too. Some licensed acupuncturists know a lot about EDS but even there, it’s not a common specialty.

      My heart goes out to people with EDS. The saying “growing old isn’t for sissies”? Well, it applies to people with EDS too. Living well with EDS takes a lot of guts and courage.

      • Kate says:

        I love yoga and have been heavily reading up on Ayurvedic Medicine and have a huge Pinterest page all about natural remedies and resources, I will definitely check it out thank you!

    • DINA says:

      I’m so sorry, that sounds so incredibly challenging :( I work as a nurse and had never really heard/knew much about EDS, so really interested in learning more about it.

      • Kate says:

        I think that there’s kind of a movement where all trying to raise to get more awareness and information to drs nurses anyone. I know zebras are a big EDS symbol for awareness, and many EDS patients refer to themselves as zebras so if you see that on shirts mugs bags sweatshirts etc its all for that to raise awareness

    • Jaded says:

      @Kate and @Erinn – I’m so sorry you both have these dreadful issues to deal with. I pray you both find the medical care that helps alleviate your difficulties and go on to live long and healthy lives.

  3. Joanna says:

    I hate that fanny packs are back 😥

    • Tanguerita says:

      THAT’S your take from the story?

    • tealily says:

      Valid take.

    • Kate says:

      I LOVE that fanny packs are back lol I got a big patchwork vintage leather one all black on poshmark. They bring in more $ than you’d expect to get an authentic leather vintage one. I saw an old woman at wawa with a fanny pack and complimented hers and we like belly tapped ours together with pride and laughed.

  4. Forwhatitsworth says:

    My sister has EDS and supposedly I have a way less intense version of it. By the time she was early 30s she had had 3 meniscus/ACL surgeries and 3 rotator cuff/laborum (sp?) surgeries because of EDS. She’s not even 40 and the doctors are suggesting knee replacement and wanted her to get hip surgery a while back but she refused. It reminds me of the end of “Death Becomes Her” where their body parts are just like falling off. It’s so hard for her to try to stay in shape or play sports for fun without winding up with serious injuries.

    • Kate says:

      That scene when they fall down the stairs is hilarious! That’s a good reference and I totally get what you mean

  5. MegBot2000 says:

    I have EDS and the medical community is so ignorant sometimes. When I was diagnosed I was literally told, “You have this thing, it’s not curable, try googling, k bye now!” Literally offered zero treatment or follow up.

    • Bebe says:

      That’s so awful! Hope you’ve been to find better medical professionals since.

      • Piptopher says:

        EDs patient here as well. Same thing happened to me. Using my mothers medical textbooks I self disagnosed at 12 but it took 10 years of constant badgering and so many appointments to finally get diagnosed. and that was just the beginning.

        All this to remind folks: invisible disabilities are a real thing and just because I look alright walking the 15 feet from my disabled parking spot to the store, doesn’t mean you can harass me (happens at least once a year, ugh)

    • Kate says:

      Omg girl I hear you with that!! So frustrating. Im awaiting treatment at UPenn hospital they have a whole wing for EDS genetics and treatment

  6. EM says:

    If you are double jointed, google EDS. It’s way underdiagnosed. I have a mild version but it is wild to realize that my bendy knees and my gastrointestinal issues are related. (Plus sensitive skin, trouble with hot weather, altitude sickness etc. etc.)

  7. Elisa says:

    Love her, one of the best musicians out there. I can’t imagine living with chronic pain, sometimes life is not fair.

  8. JV says:

    My best friend was recently diagnosed with a very rare (and fatal) subtype of Ehlers-Danlos Syndrome. She is 39, with 2 kids under 4, and the average life expectancy with this subtype is 50 years… So, yeah, not awesome. She nearly died while giving birth both times, before she was diagnosed. Also, it was just confirmed that both her kids have it, too. Life really sucks sometimes.

    • Alyse says:

      She probably has the kind of EDS which affects the internal organs and arteries, called vascular EDS. I have a mild version of EDS and had a spontaneous tear in my carotid artery when I was 38 which usually causes a stroke but I got lucky. I have swallowing and gastrointestinal issues but don’t have many other symptoms which is why I call it mild. It can be fatal.

      As you said, it runs in families. My sister has quite severe hypermobility EDS and goes through periods of immense pain.

      Sucks that Sia has this but good to see more visibility of this disorder.

      • Kate says:

        I went through the testing for that too because I had a uterine rupture at birth, but luckily it’s not vascular Eds.. I was terrified of that diagnosis

      • JV says:

        Yes, she does have the vascular subtype, unfortunately. She went her whole life never knowing why she had terrible bruises from bumping into furniture (her parents were frequently investigated by CPS), so many dislocations, etc. Now we know…

        So sorry to hear about your stroke and the issues you and your sister suffer from– I hope that this fairly unknown “invisible” disability gets some more visibility, understanding, and maybe even better treatment options down the road.

    • DINA says:

      dear god,that is horrible.

    • Kate says:

      Omg my heart goes out to her, the orthopedist I just saw recommended my son get tested for it and my heart sunk. He’s not hyper flexible at all, so I’m hoping so much I didn’t pass this on to him

  9. Cindy says:

    Damn. I’ve personally known two people with this diagnoses. One was a co-ed at college. She was accused of being a hypochondriac for years, was eventually diagnosed, and then passed away from complications at the age of 32. The other was my son’s preschool teacher. Her physical deterioration was devastating. She retired in her early 40s so she could enjoy the quality of life she had left. I wasn’t aware mild cases existed. Perhaps because mild cases would be difficult to diagnose? It’d be comforting to know it’s not a terminal situation for everyone.

    • Piptopher says:

      Mild is relative. A doctor told me early this week I had a mild presentation but the brain that is currently trying to exit my head via the spinal column hole (aka Chiari malformation, a very common EDs comorbidity) would beg to differ.

      Even mild sucks, even mild can kill people. Its an awful disease.

    • Kate says:

      So many of us have to be our own advocates and demand care.. that’s just such a tragic story I’m so sad to hear that