Words from Mik this evening reflecting not just on the scary episode and subsequent ER trip today (she’s going to be okay, but has another concussion and cervical sprain), but life with dysautonomia, too:
Dysautonomia is a pain – I call it a curse. Though patients get used to it, it never gets any easier.
If you think fainting (which is just one of many problems this illness can bring) is no big deal then I got news for you. The actual act of fainting doesn’t harm you – it’s what happens afterwards.
It can be extremely dangerous depending on where you are and what you hit. I once had a “friend” tell me along the lines of “Whats the big deal? You just pass out.” She didn’t realize it, but that devastated me. I thought she understood me to an extent. To have someone write off a huge struggle you have to deal with as if it’s nothing really bites.
This is just part of what makes me so passionate about others like me and the Hidden Hearts Alliance. I hope that with the awareness we bring people will become educated and those who once didn’t understand will approach the way they see chronic illnesses differently. And I work to have those who do suffer with these chronic illnesses have a safe haven to go to where there’s others like them who understand and they’re not alone.
So I thank all of you who have supported the charity and to those of you who have been great friends, supporters, and caregivers to someone who is a hidden heart. Y’all are absolutely amazing.
Serving teens and young adults who have #Dysautonomia and other life-changing #ChronicIllnesses