It’s #RareDiseaseDay 2026! 🎉
This #RDD2026, find our report, ‘Equity for Rare: Delivering fair healthcare systems for people with rare conditions’, our 4 inequity info sheets and our community-generated equity illustration on our webpage: https://t.co/q484gA2ENv
“But the saddest part about it is that no one even knows they existed, although they mean so much to you. In their heads it’s just “she’s not into such activities”, yet if you could, you would be a star.” Grieving the Life That I Will Never Have https://t.co/Ltkn56pP0f @AChVoice
i think I lost my spark. I talk less, I keep to myself, I've mastered distance. I'm not angry, I'm not bitter. I just don't have the energy to show up like I used to. Somewhere along the way, I slipped into this I don't care phase.
People hear fatigue and picture low energy.
What they don’t realize is that it becomes the condition everything happens under.
It slows your thinking.
Shortens your patience.
Limits how long you can stay upright or engaged.
Shrinks how much life fits into a day.
Fatigue isn’t lack of rest.
It’s a lack of capacity.
I think I lost my spark. I don’t talk as much, I keep to myself, and I’ve mastered the art of distance. It’s not that I’m mad or bitter. I just do not have the energy to show up the way I used to. Somewhere along the way, I slipped into this “I don’t care” phase..
If someone lived in your body for half a day, they’d stop asking why you’re tired. They’d stop questioning your pain. They’d stop assuming you’re “doing too little.”
People make a lot of assumptions on appearance.
Hypermobility means your body relies more on muscular effort and nervous system input to create stability.
That translates into constant, low-level work, often without rest.
• muscles working overtime
• joints that need continuous monitoring
• background pain that never fully disappears
• fatigue that isn’t proportional to activity
• a nervous system that rarely gets to stand down
None of this is visible. But all of it is very real.
If this resonates, you’re not alone. What would someone say if they spent half a day in your body?