I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
This condition and how it effects me, every part of my life, is Not a choice! I can only do what I can do!
, yes! It's so very hard when people can't fully understand what you deal with on a daily basis and how it impacts your quality of life. Thanks for joining the conversation!
Best, Erin, Team 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.
, fatigue is a completely different animal and is hard for most people to wrap their minds around. Sending (((hugs))) - Warmly, Donna (Team Member)
How difficult it is to explain that my disease is not contagious and I feel isolated when others treat me like I'm a hyperchondriac.
, oh, goodness. I am so sorry. I would like to believe we are beyond that level of ignorance, but apparently, that is not the case. I wish, just like you do, that the people around you were more educated and empathetic about your condition.
I hope this community helps you feel a little less isolated. You are not alone here!
Gentle Hugs, Erin, Team Member.
I didn't bring it on myself and and choose to be well
, those are important points. No one would choose to live with rare, chronic conditions. I'm glad you advocate that. Hopefully, that stays with people in other dealings and relationships. - Warmly, Donna (Team Member)
