Sometimes, people who don’t know crap about anything say that EDS can’t be that bad. Maybe this puts some perspective on it: I had two others family members with EDS.
Both of them were my uncles and it destroyed their lives.
I was the first in my family to be officially diagnosed via a geneticist, confirmed on my dad’s side- which explained the issues some had experienced.
One great-great aunt was actually in a true to life freak show for her voluntarily deforming joints. Supposedly, she drank herself to death.
The two uncles I spoke of were always in pain. Doctors couldn’t find out what was wrong with them and both were told they were just making it up. Over years of desperation and extreme pain, both became addicted to illegally bought prescription pain pills. Their wives left them, they lost their jobs from missing work for constant dislocations (no one believed that they could just keep being traumatically hurt from nothing and called them liars). Everyone thought they were just addicts looking for drugs, their lives collapsed a few years apart.
My uncle James hung himself in his basement in 2001.
My uncle Bruce shot himself in the head one morning in 2003.
Only after genetic testing revealed the cause did my family see this pain wasn’t in their heads, that they’d been crying out for help for years in genuine pain only to be ignored until they finally gave up.
This is why I try so hard to be positive, it’s all too easy to be beaten down by this disorder so I try to keep joy in my life. I’m lucky to know the name of the condition and have proper palliative care, I wish I’d been diagnosed as a kid- my uncles might still be alive.