Sometimes I wish sickle cell anemia was visible. I wish people had X-ray vision and could see how my cells struggle to course through my veins.
If people could see the damage that sickle cell anemia causes, I’m certain that life would be easier. Instead of constantly apologizing to people for my health-related shortcomings, I’d be commended for how much I am able to do. I’d be seen as a hero every time I fight pain and fatigue to get up in the morning.
Unfortunately, the symptoms are not easily visible.
Having an invisible disability like sickle cell means that I am always second-guessed. I feel that people have become skeptical of the severity of my condition. A sickle cell crisis can be so bad that I cannot walk, but there is nothing to corroborate the symptoms besides my tears (which people may still choose to ignore). I imagine the skeptics say to themselves, “But you were fine yesterday!”
The invisibility of my disease has allowed feelings of guilt to thrive. Guilt comes rushing in every time I have to call in sick, leave work early, cancel plans, or not show up to events. Explaining that I am in too much pain to do what I initially promised isn’t a pleasant task. I feel like I fail to relay how serious sickle cell is, and I worry that I come across as dishonest.
Growing up with sickle cell wasn’t easy. It didn’t take me long to realize that I was different from other children my age. I had to do a number of things differently than my peers, some of which may have seemed excessive, such as drinking a lot of water and staying inside during recess. I couldn’t explain at such a young age why it was necessary for my health, but that didn’t stop the questions that highlighted my feelings of isolation.
I am so happy that I have friends who will remind me that nothing is more important than my health, and that I shouldn’t care what others think or say. I know how I feel, and if I am not well enough to do something, I should be able to cancel plans without feeling like I have let anyone down. I should always be happy that I have chosen to do the best thing for my health.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.