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20 days ago
11
Posted On: October 16th 2026, 10:46 pm
This isn’t just content. This is my LIFE.
I’m not doing this to change the system overnight, or create confrontation with the anyone involved in my care.

I’m looking for answers. I’m looking for understanding. I’m trying to understand what happens when the treatment that was supposed to change your life starts to feel ditterent, when you have questions about your health, and when you’re trying to make sense of what comes next. I want to hear from the people who are genuinely trying to help us, who are willing to listen, ask hard questions, and work toward understanding.
Please don’t mistake my willingness to speak out for a desire for attention. This isn’t about views, likes, or chasing some temporary dopamine hit from social media. There are real people behind these posts. Real pain. Real uncertainty. Real consequences. And honestly, this is why it gets so hard to keep showing up, to keep opening up, and to keep responding. Because sharing your reality publicly means reliving parts of it while trying to explain something that people may never fully understand unless they’ve lived it themselves.
I’m not looking for a fight. I’m looking for clarity.

I’m looking for accountability where it’s needed, understanding where there are gaps, and genuine collaboration with the people who care about what happens to us. Because when you’re the one living it, this isn’t a discussion for engagement. This is your life.

#sicklecell #sicklecellawareness #explore #inspiration #motivation
Comments (11)
hemo_scd 13 days ago

hemo_scd

Asking questions about your own health deserves a thoughtful response. Thank you for explaining the effort it takes to share uncertainty publicly. Your experience deserves to be heard without having to defend why you are sharing it.

iamthatgirl_64 18 days ago

iamthatgirl_64

Sending hugs and prayers.keep fighting!

itszuhra 19 days ago

itszuhra

It’s so hard to be vulnerable in this social media space. It’s scary to share, you finally do it and some think it’s for attention. Not everyone will understand, do it for people who will benefit from your story and ignore the rest. I like hearing your experiences because I’m about to have the same gene therapy you had. Keep sharing for us. 💕🫂

mileshicks_ 19 days ago

mileshicks_

❤️❤️❤️

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