I’m still waiting for genetic testing from the doctor, but I thought I’d let you in on a secret. Ehlers Danlos is not a rare disease because people don’t have it but because people don’t talk about it. I know what you’re thinking cause I thought it too: Say wha? how?
Well it’s a disease that deals with the connective tissues – which is in everything. Everything that your body makes. Everything – but that doesn’t mean that everything is broken. Just means it can be easily screwed up.
As a kid I used to get such random pains – that were explained away as growing pains. I used to get crazy stretched out skin as a kid – not really noticeable now as I lost over 100lbs. I used to get tumors and cysts like crazy. I got random hernias. I got sprains and muscle pains like crazy – all that deals (in essence) with the connective tissues of your body.
No doctor sat down and looked at all my symptoms together. None. They talked about doing that but no one took the time.
We need to not be afraid to do our own research. We need to be honest with doctors about everything and when we know something is up? we push for ourselves.
Gaslighting is a thing that happens unfortunately- but it also happens in the medical world too. Fight for yourself.
Do your research
And find your answers.
I say this all the time with regards to the Bible but ya know what? It’s true for everyday life. God gives you the discernment … find that truth.