Some days are harder than others.
On the good days, I can do everything I want to do. I go to work, I see friends, I feel like I’m in control. On the bad days, I can barely get out of bed. The pain is overwhelming, and it takes all my energy just to get through the day.
One of the hardest things about living with sickle cell disease is the unpredictability. I never know when the next pain crisis will hit. I plan things, and then I have to cancel because my body has other ideas.
I’ve learned to be gentle with myself. I’ve learned that it’s okay to cancel plans, to ask for help, to rest without guilt. I’ve learned that I’m not weak for needing to slow down.
I’ve also learned to advocate for myself. When I’m in the hospital, I know what I need. I know that I need pain management, and I know that I need to be heard. I’ve had to learn to speak up, to be clear about what I need, and to find people who will support me.
Living with SCD is a daily negotiation. But I’m still here. And that counts.
Have a story of your own to share?