Why A Diagnosis Matters | Ehlers Danlos Syndrome Awareness

#eds #chronicillness #endometriosis #pots #smas #ncs #mals
It’s EDS Awareness month! Today I share my story and why a diagnosis matters.
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[@HannahMcNabb-k4v]

One reason I’ve found to be a reason among every single person who is looking into EDS as a diagnosis or has finally gotten diagnosed, is the prevention of a permanent decline in your long-term health. If we were diagnosed as children instead of told it was because we were teenage girls or because we have “growing pains,” we likely never would’ve ended up as debilitated as we are. The broken medical systems are what make EDS progress at the rate that it does, at least, if we had medical systems that were set up for disabled/chronically ill people which is really who they should be set up for considering we are the ones who need access to good medical care because we are the ones who have the health issues..I have a feeling a lot more of us would have much less severe health complications down the line. Yes, we would still have problems. Even with a good healthcare system but the problems would be much smaller. I live in the US for context, healthcare everywhere is just trash.

[@itsnikkiautumn]

@@HannahMcNabb-k4v agreed, I think it would help a lot of people if the healthcare system was better set up for the chronically ill. I fought so hard to not get to this place, but unfortunately for my doctors to take me seriously I had to decline drastically. I wish this wasn’t the case for so many people, we shouldn’t have to get to this place before doctors can do something.