I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
There are definitely times where just having a friend spend time with you. No drs appts, nothing you need done, Just someone to curl up with you in bed and watch some movie. Just a friend to hang with for awhile..
How bad the fatigue is, and this is not because I have done too much.
, yes! Fatigue related to chronic conditions/illness is SO much more than just feeling a little tired. And taking a nap doesn't necessarily fix it, either.
Best, Erin, Team Member.
That symptoms can change daily and one day you may be able to do something that you canāt do another day
, yes! Wouldn't it be nice if others were more aware of this fact?
Thanks for joining the conversation!
Best, Erin, Team Member.
That friendship should be a judgement free zone. No explanations should be needed. Accept people for who they are.
, yes! We all deserve some friends who are there for us, with no judgement.
Best, Erin, Team Member.
