So story to time and rant time. I am apart of this group on Facebook and lately I’ve been realizing people are really just dragging everyone down. It’s an Ehlers-Danlos support group and at first I got support then people started going at each other for petty things. And then began the “who’s left-handed and has HEDS?” and I can’t quite begin to explain my anger and frustration of this post. Because simple things like being left-handed doesn’t make your EDS more real than someone who’s right-handed or ambidextrous. So why does this frustrate me? I guess it’s because while no one knows what gene specifically is the reason we all have EDS but I don’t think it has anything to do with what hand you write with or what color your eyes are or what your favorite ice cream is.
And then this happened I got surgery on 2/8/17 and last night I realized my splint looks like a butterfly cocoon. So I created this picture and posted it to the group and said how the resemblance is uncanny. And someone was like “that’s funny but your picture will be deleted because it doesn’t follow the rules”. And so at this point I am thinking are they suggesting my splint is too graphic and I go comment back well it’s not graphic or bloody so I can’t see why. Well they said all pictures must be posted in comment section it’s the rule. Well let me tell you I have been apart oft his group not for a long while but when I joined it was never a rule. The only rule we had been if it is a graphic picture like rash or blood or something post it in comment section. So then this morning I see someone had posted a picture and everyone on there was commenting something good and nice and not saying it will be deleted etc.
I just feel that we all have EDS and a lot of other health issues too. So I don’t fit into society already but suggesting that I have to further fit into a mold of what EDS is because of my handedness and also by not posting a picture except in comments I feel that It’s really petty and almost like me having EDS isn’t fitting into this mold of this support group.
We are all in this fight together why make it harder than it has to be to fit into a diagnoses you already have and affects your day-to-day life.