I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
It's hard when family doesn't understand and are no
, it IS hard when family doesn't understand your experience with a rare disease. Please know members of this community do understand.
Gentle Hugs, Erin, Team Member.
I wish people knew that not all disease or disabilities are glaringly apparent. Some of us (in my case, myasthenia gravis)may be a total train wreck, but look 👀 perfectly normal. That’s what I wish.
. empathy is an undervalued trait, but that is what lets people say, I don't know their circumstances, but maybe I can help. I wish we could pass it out and have everyone embrace it - Warmly, Donna (Team 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<
hi Donna oh yes. I think they have been extremely supportive. Even in times that have been stressful for everyone. Thank you for responding. It means a lot. And thank you for being a CNA. I was a CNA briefly. To me they are the backbone of healthcare. Hats off to you! So also take time to be kid to yourself too! 🥰🥰 I'm so glad to hear that you have found a strong support group. It is so important to have someone to lean on. Honestly, being a CNA was a gift to myself, I learned so much about myself, and received more love than I gave. <3 - Warmly, Donna (Team 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…
and then there’s always the “ I’d rather not discuss it”. If they’re brand new acquaintances, how RUDE! I wouldn’t say it, but really… , I get that. I feel the same sometimes, I get torn between, kind of impertinent to ask, and providing a real answer - but you still wonder ni the back of your head - do they really care or is it gossip fodder? What a world, lol. - Warmly, Donna (Team Member)
