This year I've had sepsis, been diagnosed with late onset epilepsy, had two seizures and almost died, and have had to drop my uni studies for the third time. EDS has ruined my life, I can't take it anymore.

Hey, it's okay. I had an aneurysm and am barely surviving while I deal with other health stuff- a lumbar puncture that made my chiari worse, sleep disorders that have persisted for 3+ years, pots, eds, etc. Shit is roughhh. Nobody ever believes that these things can actually affect who you are as a person, or they're incapable of understanding how much they affect you. I think it's difficult for people to deal with the fact that one of their 'people' is 'giving in' to it all despite the fact that we've fought as long and hard as we can while also trying to reach the finish line, if that even exists. Most people don't like to hear about things that can't be oVeRcOmE by sheer will and good intentions. It's anathema to everything they tell themselves to feel okay about life.

Anyways, I'm sorry you're going through all this. I believe that we'll come out of this in a slightly better place than we are now. I mean, we have to, right? Sure, you'll probably have more seizures and I have another aneurysm waiting to burst, but it's not like those aren't debilitating disabilities in their own right. We've fought long and hard enough to deserve a break. If chiari/eds/pots has taught me anything, it's that it's okay to slow down and that you might as well do it be life forces your hand. It sounds bleak but it's true. There's lots of enjoyment and peace to be found in the eddies of life if we're willing to look for it. It sucks but we don't need to make it suck worse for ourselves.

My plan is to get through this series of events, probably have a few surgeries, then reattempt college once I feel like my acute physical problems have stabilized. I hope that you're able to do something similar or find viable solutions in the meantime. I've found that it helps to contemplate career and educational changes for the sake of adapting to the new me. Good luck, you can do this (even if you don't want to).

/r/ehlersdanlos Thread