Believe Me... Please
3 min read

Believe Me... Please

Believe Me... Please
Photo by Andy Montes de Oca / Unsplash

Have you ever told someone something about you, and they don't believe you? Or they begin to question you and make remarks about how you are lying? Or they just treat you indifferently because you cannot possibly be telling the truth? Well, so have I. In my experience living with sickle cell, I have encountered situations where my condition and my pain from a crisis is often questioned, which often makes it difficult to get the necessary help I need.

Living with an invisible disability can put you in different situations where you have to disclose your health condition or remain silent. Many people living with an invisible disease often want to keep silent about it because it is a way to feel normal and not have a constant reminder of their health condition. In the past, I never told anyone I had sickle cell if they were not family or a close friend. I was not ready for the usual comments, “oh, but you don't look like one at all,” (rolling my eyes). So, I would live my life just as I wanted without having to answer a million questions.

However, because of this, many times people don't believe you when you actually require help, and you explain your situation. I remember when I was in high school, I had a note on my file that said I had sickle cell, so I was exempted from my physical education class. So during this period, I would go to the class but I would sit down and watch my classmates enjoy themselves on the field. One particular day, my instructor didn't understand why I was not participating, maybe she forgot, I don't know. But, I actually got punished for not participating in class that day. I tried to explain, but she would not hear it. She thought I was making up excuses to skip out on the class activities... I was not.

In another instance, I decided that I needed to work out and keep fit, but I knew I couldn't work out as much as others, So when we would talk about exercise and I would share that I can't do this exercise or that, I knew a few people who would always argue with me about how I was being lazy and just giving excuses. It's like you are on trial, and you have to constantly defend yourself because outwardly I look as if I should be able to do everything, but the truth is...I can't. My body does not produce as much energy as it does for others. In one similar situation as this one, I tried to push myself to prove that I could do all the exercises that everyone else could do...I didn't want to look like the one who always gave up. That session left me on a bench gasping for breath and unable to move. I lay on the floor of that gym for a while before I had enough energy to get home.

One day, I had a crisis and I walked into the hospital and the first thing I said was, “I am having a crisis, I need help.” I was not screaming, crying, jumping up and down….nope. I was calm and looking very normal. It's either the nurse didn't understand what a crisis was or I looked too calm to be in pain, so it took them almost an hour in the waiting room before I was attended to. What happened after, is another story that I already shared in a previous post. So, when I say I am in pain…believe me.

People with sickle cell do not have to prove to you that they have it. Just listen to them and do your part to help. I believe that is a good step in providing support and being an advocate for people with this condition.