I simultaneously felt pain and relief when I first uttered the words “I have Sickle Cell and I am ashamed”. It was sort of liberating. For the last couple of years I couldn’t quite put my finger on the pressure I was feeling. I was frustrated. I was sick frequently and my health (or lack thereof) was preventing me from reaching my goals. I’ve had sickle cell anemia my entire life… and I am just now realizing how ashamed I am that I don’t fit into what society deems “normal.” The shame that attaches itself to you when you have a chronic disease can sometimes be overwhelming and consuming.

When I was a child I was very fortunate; my crises were few and far between – so much so that I can remember each of them from the age of 4 to 19. I remember the pain, the confusion, and the missed days at school. I remember how horrible I felt, and how I was worried that I would be so behind in my schoolwork. The one thing that I don’t remember feeling is “different.” I was either too young to realize that not everyone was sick like me or I just never got sick and had such normal teenage years with my age-mates. I would go out, party all night, hangout all day with my friend during holidays. My mother took such great care of us that I never looked at sickle cell as something that would change the way I lived, I never felt ashamed. 

In the eighth grade I used to skip school whenever it would rain during winter time, something that seemed so normal to me, I just didn’t want to get sick whether it be pneumonia or a cold, I wasn’t even thinking in terms of getting a crisis. I explained to my friends, the best way a 13-year-old teen could, that I had sickle cell disease and I could get really really sick. Long story short, they teased me so much and every time it rained I would start skipping school on random days to throw them off. My mom did her best trying to explain to me that this was normal and nothing to be ashamed of, that other parents should be doing the same thing especially in winter . But the damage had been done. For the first time I felt “different” and ashamed, and I learned that having sickle cell disease could be used against me. I never wanted anyone to know again. I carried that shame, and my chronic disease became my secret. 

Because my sickle cell presented differently as a child, it was easy to hide. This continued into high school. I never really had visitors at the hospital outside of my immediate family; friends never visited. And when I missed school, I just told my friends I was sick. No one outside of my family knew I had sickle cell. I just thought I was protecting myself, but now I know that the shame of being different caused me to hide myself. 

After 21 I lost count of how many times I was hospitalized, because my crises started happening more frequently and they were harder to bounce back from. Sickle cell showed up with a vengeance, seemingly making up for lost time. By this time I was in college, and fighting to keep up with my classes because I was getting sick so frequently. It took me seven years to graduate undergrad. It was then when I felt the shame of not keeping up with my peers. The feeling of being behind was so embarrassing: Seeing all of my classmates graduating before me felt like I had failed.  Because having sickle cell had never held me back academically before, this was a new type of shame, a new type of defeat. 

As I moved into the stress of adulthood, my crises started getting worse. In a year’s time I was either in a crisis, recovering from a crisis or going into a crisis. More than the physical pain, I started to feel the mental and external pressure of being sick.

By society’s standards we all should go to college, get a degree, and get a job where you can climb the ladder into a rewarding career – all while pursuing a family and striving to leave a legacy. No one really admits it, but we all can get caught up in the rat race of striving to be a part of the norm and to fit into the social construct of “normal.” I know I did and still do. I fell into the trap of trying to gain “success,” doing my best to forget that I have sickle cell. Having a chronic disease changes everything, including the dreams you have that are shaped by society. Failing to meet the standard brought about a shame that undermined almost all of my hopes and dreams.  

As hard as it is to admit… it is humiliating to be sick. Especially when you live in a world where the expectation is that you are healthy, but you can’t “keep up.” Living the life you always dreamed of seems just out of reach. When you constantly have to stop because your body is betraying you. It’s embarrassing. I have a hard time not blaming myself for not being able to do the things other young adults my age do. The shame has almost become just as much of a burden as sickle cell itself. Thinking that I should be strong enough to overcome the physical and mental pain that comes along with sickle cell. I am ashamed. 

I am ashamed about not being able to do what I used to.

I am ashamed about HAVING to rest in between daily activities. 

I am ashamed about being 27 and still dependent on my parents.

I am ashamed about taking 7 years to get a degree and not the suggested 4.

I am ashamed about not being able to work a 40-hour week.

I am ashamed about having to take days of rest after an event or after traveling. 

I work 100 times harder to appear normal. When I’m healthy I can easily hide my sickle cell. When I’m not healthy I hide myself. 

All because of shame. 

Recently, like this year, I have decided to confront my shame. I didn’t want to live in shame anymore. I started to look at my life, and I realized that the circumstances that I was ashamed of were actually things that I should be proud of myself for.

As hard as it is, I am starting to change my perspective. I am starting to confront the shame I am carrying. Instead of telling myself that I should be ashamed that I am “different” or that I am not “keeping up” … I am telling myself that I am resilient. That despite sickle cell and all the complications that come along with it, I am still here. I am still surviving and trying my best to thrive. In confronting the shame, I am learning to accept that yes, I have sickle cell and because of that, I have to live a certain way that is different from that of a healthy person. But that doesn’t define who I am. I have chosen to stop beating myself up for things that are not my fault. 

I have a chronic disease and I am resilient. 

Wrestling with shame has brought me to some truths: I cannot put my life and health in jeopardy just to align myself to societal standards. Shame is too heavy a burden to carry, especially when I don’t have to. I am doing the best I can and that is enough.