I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
I wish others, including my wife sometimes, knew that I have to prioritize my health above all else, and that sometimes I have to bow out from activities I have committed to - because I don't know when my body won't allow it. And that it isn't them.
Thanks so much Donna. I've been reading your responses all afternoon. You are so open and kind. Reading all these responses has been therapeutic - and when I read one of them that was so sad, I just started sobbing - for the first time since my diagnosies, 9 years ago. So, I realized how much anger was in me that I was hiding - and that it came out when I was with my wife - which explains why she had such a negative attitude about all the things going on in my life. You can't hide what's real - or it will bite back very hard. And that only brings hurt. , (((hugs))), thank you for your kind words, they mean a lot!. It is hard, and society does not prepare us for or have the patience to walk us through the hard times. Being angry is normal, so is being confused and feeling lost.
We always want to be strong for our partners, and not have to lean too hard, and we get angry with ourselves for having to, and with them - for much the same reason. Sometimes it just takes sitting down and baring our souls, crying if we need to, and joining hearts and hands to move forward together. Sending lov and light towards finding the way together. <3 - Warmly, Donna (Team Member)
I may look like Iām able to do things, but you donāt see me when I go home at the end of the night and I am an excruciating pain and stuck in bed and then I have a flare the next day
It isn't always obvious that a person has a rare disease.
That fatigue is not laziness or having done too much. I can get a good night's sleep and within a short time fatigue can hit. It is something I have learned to deal with.
, people seem to have a hard time differentiating between being tired and being fatigued. Sending ((hugs))). - Warmly, Donna (Team Member)
