12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome – Yahoo News, syndicated from The Mighty – by Cassidy Colbert – Feb 2019

I’m encouraged to see this article about my specific painful genetic disorder discussed on Yahoo News, and that Yahoo News is syndicating content from The MIghty, an online publication filled with our stories.

When many people talk about Ehlers-Danlos syndrome, the symptoms they often focus on are hypermobile joints and elastic, velvety skin.

However, since EDS is a connective tissue disease (and connective tissue is found throughout most of the body), the condition can cause a plethora of other symptoms – some of which may be considered “taboo,” and can be more difficult to talk about.  

So if you’re experiencing unpleasant or even “embarrassing” symptoms, it may hard to discuss the details of what you’re going through with a doctor or trusted friend or family member.

Talking about certain aspects of our health, like gastrointestinal issues, can often still feel awkward, or a bit “off-limits.”

But you should never feel like you’re not supposed to talk about symptoms or side effects others may see as “taboo.”

Even though they might be tough topics to bring up in conversation, it’s important we raise awareness of their effects so EDS-ers can feel more supported and understood.

Here is what our community shared with us:

  1. Urinary System Issues
  2. Skin That Bruises or Marks Easily
  3. Difficulty Regulating Weight
  4. Women’s Health Issues
  5. Prolapse
  6. Gastrointestinal Issues
  7. Fatigue
  8. Pelvic Instability
  9. Difficulty Swallowing
  10. Having “Bad” Posture
  11. Fear
  12. Painful Sex

It’s comforting to read the full article and find so many of our “yucky” symptoms so plainly discussed in print “for all to see”.

We need to overcome our embarassment and talk about the problems our conditions cause us and become more visible. Information tends to spread, so if you can just enlighten one person about the difficulties we live with, they may share it with another person too (“I know this lady with a really weird condition…”).

The article also contains many more links to other articles with more information.

4 thoughts on “12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome

  1. canarensis

    It’s infuriating for people to act like intestinal & such issues are “not to be talked about,” like we’re back in Victorian times when women didn’t get pregnant & legs were only called “limbs.”

    For cryin’ out loud, isn’t there a children’s book called “Everybody poops”? Adults with health issues aren’t allowed to? People, I swear. Like living with EDS isn’t hard enough already.

    Liked by 2 people

    1. Zyp Czyk Post author

      I think we’d feel differently if our bodies had always done everything we asked without complaint. We get so used to talking about our body’s malfunctions because it’s what we’re living through, those are the issues we’re grappling with. People without pain don’t have to think about their bodies all the time like we do.

      Liked by 1 person

      1. canarensis

        Good point. Though some of the “civilians”* I talk to sure do act as if the only interesting thing in the world is their latest hangnail or nearly invisible pimple (actually, I should’ve said “listen to” rather than talk to). One woman in particular springs to mind; every single time I see her, I get harangued for hours (literally, unless I flee) on how her life is utterly destroyed because…she can’t wear mascara any more without it smearing because her skin has gotten oily. She truly believes this is a major catastrophe. How I’ve managed not to strangle her yet is a testimony to my remaining willpower.

        I suppose being very sick for most of my childhood gave me lots of practice in distinguishing between minor annoyances & true illness. I never had the classic teenaged feeling of immortality; came too close to dying too many times growing up & knew my body was screwed up from the get-go.

        *those without chronic pain or chronic illness

        Liked by 1 person


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