What is the most frustrating or difficult aspect of living with a rare disease?

Hello everyone,

living with a rare disease can bring many challenges, and some can feel especially difficult or isolating in daily life.

What is the most frustrating or difficult part for you?
Is it the symptoms, the uncertainty, the lack of understanding, access to care, or something else?
And what helps you cope with it a little better?

Please feel free to share your experience with the other members. 💛

Take care,

Somya from the Carenity team 🌼

@Hippycat73 @karenace1 @Mandie61 @LadyInPain1 @Guzeluk @martinhooper88 @izzpop @alanbinfield @Kellyseye @suey68 @tootsy29 @Coco78 @mumof4boys @healing @rudimehta @Carolyne @She-ra @Ruby13 @maria68 @SusanC @adlibby @Harrybow @Caroline57 @Bex2407 @Sneezydee @Ksh1960 @mizmoll @Dawn1967 @atkinson @smokitcat @Lealea31 @Mercerniki @Josanne5 @Cruddick @Amiira2017 @Sos123 @Tahirah87 @Victoria1968 @Divinidad @Jackleo1 @LouiseElcross @amedha @Orvilleking @Larryg407 @Savita3 @CEASER06 @Markpaling @elephantintheroom @Suziz3 @Ditsypotter @Mossy1 @AuntyDizzy @Mollyhall57 @Mustang @Brianlyon @Spike1 @PeanutBrown @estherwhite @Joanna64 @Peppermini @Janmilakovic @NickyP18 @Wafaa.elhoucini @jinksy @Zack/G @ALICENJIRIRI @Jayne2951 @Chaszzz @Gregory @ekdevine22 @Marybetty @unhappy @BobbieB @J3Mummy @MayaThethy @Artman @KarenBradley @roblaw @DavidC23 @Bridie @Stottycake @Bennys @Glencairn @akonline44 @Lea1984 @XLHWarrior @GeraldineC @zeyatgokce @maia-mann @Carolann66 @hesham @LadyJan