I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
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<
, I'm glad to hear they are receptive to your feelings and your needs. Hopefully, they are perceptive with the things that may go unspoken, as well.
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)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! 🥰🥰
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…
hi. Good question. No, but that is ok it is more of a guide so maybe they at least look up my condition while treating me. So far That has been very successful. , I hope the averages start to accumulate. If they even look at it, that's a plus I guess. Maybe something will stick in their minds and they will do some independent research. And maybe they will be more receptive with the next patient. We can dream, right? And every success is a huge win! - Warmly, Donna (Team 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!
, 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.SO true. My husband is not very supportive of me being sick. I have 4 autoimmune diseases, a spine disease, asthma and psychiatric illnesses, and I remember one time he came into my office when I was studying and told me, "Man, you used to do things and now all you do is sit!" That makes me sad when he says things like that. Makes me feel like I am just existing. I am trying to go to school to become an NP to keep my brain active and it helps keep my spirits up because I have always loved school. I just don't know physically if I can do it or not. I'm trying though guys!
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)
