A love for cooking was instilled in me by my parents – I can feel the food in my soul, knowing exactly when it is rightly spiced and flavorful. This led me to my current career as a chef, which can be a struggle when living with sickle cell disease. Spending long hours lifting heavy items onto shelves and rarely getting a moment to yourself is strenuous and exhausting on the body.
What compounds this struggle is the barriers I face in the workplace because of my sickle cell disease. For more common conditions, like diabetes and cancer, sympathy and assistance are automatic. For sickle cell disease, I feel as though I am constantly trying to explain myself to supervisors and colleagues who have trouble understanding because of the rare nature of sickle cell disease and the fact that I look, act, work, and talk normally. I will go to work the day after being treated for a pain crisis because of the ridicule I fear facing if I were to call in sick or the resentment I would create within my colleagues. It’s not worth explaining over and over that every day is not a good day for me – just because I was capable of doing something yesterday does not mean I’m capable of doing it today.
Even beyond my workplace, those who know me well have similar struggles in understanding my condition. On days when I am not working, I want to take it easy at home. Sometimes I feel like family and friends expect that I attend social events and are available to them whenever they need me. They do not fully comprehend that I may prefer to be at home, and they may not always be able to tell if I am in pain since I have gotten more skilled at hiding it. You cannot tell by a look what’s going on in his body, what’s going on in this frame, what’s going on in this head. Instead of setting expectations for me, I appreciate it when those around me actively support me, showing me that I do not need to say anything for them to want to help – they understand and are there for me.
I’ve felt unheard in many domains of my life, whether it be in my workplace, with those close to me, or in healthcare settings. Despite this, I have been a professional chef since I was 21 years old and built an incredible family, consistently pushing through the hard days, weeks, and months.