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
thank you for reading my reply. Stress management for me on days sometimes looks like painting crafting getting out of the house. Spending some time with my service stock trying to teach him an extra skill that will help me sometimes just calling someone and talking through how I’m feeling now that I had to leave the field of nursing after almost 20 years to be home I’ve had to find different outlets for stress management, other than going to work lol other people might find being stuck at home all the time depressing luckily, I was already educating patients on things that they could do so I had to reach into my own toolbox and apply it to myself😉 
,, 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)
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.
