The Weight of Rare Disease
This giveaway has closed but we still welcome community members to share their perspectives.
Living with a rare disease comes with challenges that many people may not fully understand. Beyond the physical symptoms, there’s the emotional, mental, and social weight that comes with navigating life with a rare condition.
How does living with a rare disease impact your daily life? What are the heaviest burdens you carry—whether they’re physical, emotional, financial, or social? And how do you find ways to lighten the load?
Stress management also volunteer work
,, I love painting and crafting/needlecrafting as well. And for me, getting out is somewhere in nature - I'm not much of a people person, believe it or not, lol.
It is easier to help other people than to take that advice yourself. I sometimes flummox myself when I know the answer is the advice I share, lol. I'm glad that you are finding fulfillment in advocacy., especially with a heart for nursing.
Thank you again for sharing! - Warmly, Donna (Team Member), Just checking in to see how you are, if you've gotten better at giving yourself grace (I have marginally - it's a work in progress), and how your advocacy is going. Do you enjoy doing advocacy work? - Warmly, Donna (Team Member)
day by day
, I hear you! You just have to take it day by day (and, on the really tough days, moment to moment).
Best, Erin, Team Member.
Eating healthier and walking as exercise
, do you find that you are feeling stronger in taking these steps? Do you have a step goal? I'm an amputee, and my son got me a walking pad for Christmas. I've set myself a 5,000-step goal. My competitive mind says "is that really enough?". We can - or at least I do - do ourselves a disservice with expectations. - Warmly, Donna (Team Member)
Keep moving. I swim daily. Use Nautilus and stationary bike. Couple days a week. Walk my dog weather permitting.
, I love that you keep moving as much as possible. And changing up your activities is a great way to keep your muscles guessing and avoid injury.
Thanks for sharing!
Best, Erin, Team Member.
