kelly-miller
What is one thing you wish more people knew about living with a rare disease?
HopefulATSER Member
I wish that more people knew that we are navigating and juggling multiple areas of our life. Sometimes we feel pressure to please, caregiver, show up, and overdo when we actually should rest. However we are wanting to show up to functions. Rest is so important. We must first listen to our bodies so that we can be better >insert title<
DonnaFA Community Admin
I understand completely, I was a CNA and then a mom, so I'm much better at caregiving than asking for care, and as much as I hate to admit it, accepting gracefully at times. We're all always a work in progress ❤️ - Warmly, Donna (Team Member)
HopefulATSER Member
Wahine Member
It is so tiring to explain over and over what my diseases entail; a short synopsis doesn’t do enough but anything longer gets overwhelming for them and me. But in order to advocate, there has to be understanding…
HopefulATSER Member
DonnaFA Community Admin
Sheri 173 Member
This condition and how it effects me, every part of my life, is Not a choice! I can only do what I can do!
erin.rush Community Admin
Best, Erin, Team Member.
CommunityMemberb0164a Member
CommunityMemberbd9081 Member
How tired my body always is and each day I fight through brain fog while “functioning” on fumes. Even on the rarely seen “well rested good days” my body will burn through that energy faster than healthy people realize.
DonnaFA Community Admin