“What’s wrong with you now?” I am all too familiar with that phrase. From a young age, I have often felt like I’ve had to prove myself in regards to my health. As if this disability isn’t enough, I’ve also had to deal with others’ opinions.
Sickle cell can be very unpredictable. A sickle cell crisis can be triggered by a variety of factors, including temperature, stress, and dehydration — not to mention mystery triggers. I can’t control all the factors, so despite all my efforts, I still experience episodes of pain. One minute I can feel perfectly fine, and the next, my crisis can be so painful that it requires medical assistance. Other times, the pain leaves as quickly as it came. Sickle cell’s unpredictability often gets very frustrating and exhausting.
Many people don’t understand the condition’s unpredictability. At times, others have cast doubt on me while reporting my pain’s frequency and severity. Multiple times, I’ve told someone I was in pain — be it a family member, friend, teacher, or employer — and their initial reactions implied my struggle was an inconvenience. I’ve gotten subtle eye rolls and sighs. Some have even gone on to say phrases like, “What’s wrong with you now?” or condescendingly, “You were fine just yesterday.”
Such responses make my heart drop and leave me feeling betrayed. My character felt attacked, like I was being branded as a liar. This was especially hurtful when I was much younger and not many people knew about my health; for me to confide in someone and receive such a reaction made me reluctant to confide in them again.
I was consequently led to believe that it was abnormal for me to feel as much pain as I did, so I reduced the number of conversations I had surrounding my health. If I was not feeling well, I would do my best to manage the pain, only telling someone else if it got to a stage where I could not handle it by myself. This was a very dangerous practice as it often resulted in unnecessary hospital admissions to deal with issues that could have been tackled much earlier. I placed too much importance on others’ opinions when it came to my health and so I didn’t give my body its proper, needed care.
An invisible illness proves to have its own set of challenges. People may often question and doubt the things you say in relation to your health because they’re unable to see what is happening. However, I started to realize that those who always questioned my health were people who simply lacked understanding of sickle cell’s effects. Once I realized this, I stopped trying to adhere to their beliefs of what disabilities “should” look like, and instead tried to educate them.
Despite knowing all of this, I honestly still feel a little down when someone asks, “What’s wrong with you now?” But all of us sickle cell warriors need to remember that health comes first. Do not let others’ disbelief make you feel like you’re something you’re not — just focus on yourself! To those who know someone with an invisible disability: Please be mindful of your language around them.
I would love to know your thoughts. Let me know in the comments section if you’ve had similar experiences!
Stay safe! x
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.