10 Things I Wish People Understood about Living with a Chronic Illness
Photo by Insung Yoon
Living with a chronic illness, such as Sickle Cell Disease, Thalassemia, and other red blood cell disorders, can be mentally, physically and emotionally stressful. Sometimes, it can feel quite lonely. Here are 10 things that I wish more people understood about what it is like to live with a chronic illness:
Going to medical appointments is work!
Sometimes going to a medical appointment, you feel like a number that is just being checked off. You’re just a “ticket” waiting to be seen.
The weight of having to process my last medical appointment, treatment plan, and follow-up – all on my own
Some days, I just want to crumble into a million pieces. This could be because of my mental health, pain my body, or carrying the weight of my life on my shoulders alone.
Wondering if I seem “crazy” for following up about my OWN health
Getting no vacations from my chronic illness
Managing all the ‘regular,’ everyday tasks (work, school, and bills), on top of my chronic illness
Going to sleep knowing that, when I wake up, I have to do it all over again
Trying my best to show up as a friend, cousin, and daughter – even on my worst days
Sometimes, I just need a hug or words of affirmation to know that I’m doing well
Remember to give yourself grace and practice self-compassion. We are trying our best in a world that does not truly see or understand chronic illness.
What are things you wish that more people understood about living with a chronic illness?
About the Author
Bethany Morris (She/Her) is a young woman who enjoys advocating, learning, and reading about how to make life for Sickle Cell patients more manageable. She currently has her ECE, BA in Sociology and working towards pursing higher education. In her free time, she enjoys reading, listening to music, and implementing self care practices into her life to ease the stress of managing chronic pain. She also enjoys writing and making posts to share with others on how to live life more easily with Sickle Cell. You can check out her tumblr and IG page.
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