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:
- Urinary System Issues
- Skin That Bruises or Marks Easily
- Difficulty Regulating Weight
- Women’s Health Issues
- Gastrointestinal Issues
- Pelvic Instability
- Difficulty Swallowing
- Having “Bad” Posture
- 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.