News & Events

Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome

By DM Sullivan 

2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment Tonight and TMZ.

As a mom and patient advocate who has been supporting EDS families for the last six years, I felt a renewed sense of hope. Maybe these women with their star power and influence might bring some much-needed validation to help kids and families struggling in the trenches trying to get care and support.

My enthusiasm was short lived. First I witnessed the unflattering coverage that Lena received,  and then came my realization that SIA is a very private person and may not be adding a lot to the conversation. But the wind was really taken out of my sails this week with the news that Jameela Jamil was accused of having Factitious Disorder or Munchausen Syndrome; a psychiatric condition where people consciously fake medical symptoms for attention or reward. Twitter blew up immediately with judgement and skeptical tweets questioning the validity of her invisble illness – ugh, she really is one of us!

People with Ehlers Danlos Syndrome face a higher risk of being accused of suffering from Munchausen, even though the condition is estimated to be just .02 to 1 percent of the medical population. I have met so many kids on this journey who are traumatized from having their parents accused, or their symptoms questioned or not believed. The gaslighting and psychological stereotyping that people with EDS endure demonstrates the lack of empathy for people who live with chronic and invisible illness.

I realized the ignorance and bias around EDS is even more powerful than celebrity, as Jameela herself explained:

“Ehlers Danlos Syndrome means always having people doubt your illness and injuries because you look okay.”

Unlike Cancer, Muscular Dystrophy, MS or other debilitating conditions, Ehlers Danlos Syndromes do not have high profile spokespeople or road races or telethons to raise money for a cure. There is currently no EDS specialty clinic where one can get coordinated care or even adequate funding for research (which is pretty remarkable when you look at the numbers and recognize that at 1 in 5000, EDS is actually as prevalent as cancer in the general population.)

EDS and its variable co-morbid conditions are still poorly recognized and highly misunderstood in the medical community, so it is no wonder that friends, family, and fans struggle to understand and feel empathy towards symptoms that range in severity and wax and wane from day to day.

But the kids we support at TCAPP desperately need role models like Jameela who live successful lives in spite of their pain and struggle, and who stand up for themselves in the face of unwanted judgement and shade. Young people battling illness and disability need to know that they deserve respect and cannot let the judgement of friends, or the feeling of being marginalized by a medical system that didn’t recognize their symptoms affect or define who they are. Living with a rare, misunderstood or controversial diagnosis can be hard. So many of our young girls with gastroparesis are traumatized by forced feedings and being mislabeled as suffering from an eating disorder. While many other kids field unwanted judgement if they are sidelined with pain and someone questions them because they looked “just fine” the week before. Why can’t people lead with support and understanding?

The ugly truth about Ehlers Danlos Syndrome is that it is still highly misunderstood and often not well respected. Apparently even famous celebrities are not immune to the judgement and bias.

But every time someone stands up and makes noise, the voice of the Dazzle becomes louder. Jameela’s fierce response to her haters on Twitter should help to empower us all. (And her boyfriends defense of her was wonderful too:) We need more role models to stand up to these uncomfortable realities that the EDS community and other invisible illnesses face. The EDS community is gaining in size and making great progress towards acceptance and better understanding. You don’t need to be a celebrity to make a difference though, we all can play a part by sharing our stories, participating in patient advocacy events or supporting local non-profits with donations or volunteering.

Just stand up and be unapologetically you.

Or, you can sit or lie down if you are having a bad day….  🙂

 

Do you ever feel judged because of your invisible illness or have a story to share? 

 

12 responses to “Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome”

  1. Bonnie says:

    Great article and response! Thank you for helping our EDS and chronic pain warriors!

  2. I was accused of fii and went through 3 years of hell and nearly lost my children and now I’m diagnosed also and still live in fear that my 12 year old still has to be careful of what she says as they could come back. It was 3 years of being scared that I could loose my children at any point.

    • Donna Sullivan says:

      Michelle,
      I am so sorry that you went through that…. sadly your experience is becoming more prevalent. I may be in contact as I am working on a project on this topic. So tired of seeing good families being hurt.

  3. Kelsey says:

    Yes, even after going through tethered cord surgery TWICE, as well as CCI and Chiari surgery, my pcp, who is the most skilled primary care physician I have had thus far, still doesn’t believe that my hips sublux on a regular basis, and believes I need X-ray evidence EACH TIME. I don’t like in a hospital! It takes a lot of patience on our part to stick with doctors long enough to educate them.

    • Donna Sullivan says:

      Sadly it DOES! But keep going…. I posted that I used to take pics of my daughters knees pointing towards each other so her doctors would see what it was like. I hope you can strengthen and get more stability … hang in there!!
      🙂

  4. Ashley says:

    I am dealing with this very situation right now. I’ve had Chiari decompression, craniocervical fusion, bilateral styloidectomies due to Eagle’s Syndrome. Now we’re dealing with what appears to be headaches and neuro symptoms from intracranial hypertension but my team is not listening. I was sent to see a neuropsychologist who deemed that I’m “not coping and need to learn how to live life and stop seeking answers to fix my symptoms.” He suggested counseling and physical therapy. I can barely make it thru the PT due to the pain levels and my physical therapist is EDS knowledgeable. The medical gaslighting has taken an emotional toll on me as well as the intense physical pain. I had a job as a hospice nurse that I absolutely loved but physically couldn’t work anymore. I’m 4 classes away from my nurse practitioner degree and don’t know when I’ll be able to restart classes in order to finish my degree. It’s just so sad how we’re treated. I’m currently seeking more opinions.

    • Donna Sullivan says:

      Ashley, I am sorry to hear things are so difficult right now. I feel like we are all puzzles that need to be worked out. Once all of your co-morbids are identified, you stand a better chance of managing symptoms more effectively. Hang in there and know that the community stands behind you and understands. Hang in there! XOXO

  5. Kerry says:

    I lost my family because of it. Well not everyone. I still have my mom. She was cut off from them too because of it. I’m better off. Now that I’ve accepted the distance I realize how abusive my family actually was.

    • Donna Sullivan says:

      Kerry, so sorry to hear but sadly your story is more common than people realize. I always loved the quote “Friends are the Family you Choose.” Hugs

  6. Alison Moore says:

    I was diagnosed with EDS in 2015 but my health declined dramatically in 2012. My daughter was 9 years old.. since I have autonomic nervous dysfunction sometimes I can not sleep at all and other times I crash. I was a single mom at the time. A family member called child support services on me for sleeping during the day. He said I am neglecting my child. I was shocked and now do not talk to my family about any details regarding my life with EDS. So much for understanding family. For some reason it is not seen as bullying.

    • Donna Sullivan says:

      So scary Alison, but I truly think that it is hard to understand this life unless you live it. CPS is all to often called on families and that is another injustice the rare community is dealing with. Thanks for sharing your story and I hope both you and your daughter have better health days ahead.

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