Most of the EDS community is suffering so badly. Very badly. I'm hearing what I initially hoped and prayed is nothing but a bad dream, but it's not a bad dream. It's real. I don't know if I want to say what I'm hearing. People are losing their battles. What I feared most, what I was told by so many "couldn't be.. oh no it couldn't be." No.. it is. It is happening.
The reasons for such suffering are geographical and financial, especially the latter. But - the underlying reason for the former is systemic violence and greed. The "Scroogey" medical systems can't financially sustain us, and so it's like they passively want us to croak, because they don't know what else to do. No. No. No. Find a better solution, ASAP.
The Cystic Fibrosis community had the same problem 30-15 years ago, and it has stabilized and gotten better to a large extent, thanks to the grassroots efforts of loving family and friends, and some brave ones sick themselves advocating from bed. Before then, the financial situation of the CFers family was the thing that primarily dictated their lifespan and quality of life while here. It's similar with EDS in this way.
It's the hardest thing of all, to be the injured advocating against injuries. I have to try and save my own life but not without making it loud and clear that I am not the only one who needs saving. It's heart wrenching, the amount of suffering of innocent people, and their families, who happen to be hit with this horrible disease.
What I'm hearing gives me goosebumps, makes me quiver, and gnaws at my heart. The USA isn't a magical place to get help obviously. It's a place where most EDSers are suffering tremendously, just as they are all over the world, other than a few lucky ones who have been able to get to the doctors, who have been able to pay or whatever. This isn't to put them down. Anger and resentment helps nothing.
But it should not be this way. Overall, we are drowning..drowning in the consequences of severe inequality and greed. The more severely affected are losing their lives, and even those who won't lose their lives are suffering in several ways, especially if autistic/neurodivergent too (many zebras are autistic/neurodivergent and vice versa.) We need the world to stop denying the truth, and take a stand for us.
However, most of them don't, and instead, they catch the "Be abusive and/or neglectful to zebras" mind-virus that seems to be as contagious as the common winter cold, as well as the "blatantly deny Ehlers-danlos exists and is a serious illness" bug that runs as rampant as a stomach flu passed around a holiday banquet....
Come on people, think for yourselves!
Even our own families sometimes abandon us.. pathologize us when we're gravely ill right in front of them, by walking away so they don't have to see the truth, and then proceeding to make "up their own version" of what the truth must be. Which of course is just insulting bunk. This is called cognitive dissonance, folks.
.. Yeah many of them buy into the denial..and break our hearts..betray us .. just what a sick and scared and suffering person needs, right? They are part of the problem.
Those who stand by us, help us, stand up for us or with us; they are preciously invaluable, and thank you so very much to those people who see and think for themselves, and with their hearts, for their zebra friends/family members. Bless you. Truly.
But all people. Family, friends, bystanders even. All people: Get out of denial and stand with the zebras. We need your help. Don't turn your back. Have the courage to turn around, and open your eyes.