Have you ever told a friend about a real life experience and the person found it difficult to believe? Then you are asked all kinds of questions which suggest that you are making up the story, or the person puts up and indifferent attitude because you cannot possibly be telling the truth?
Well, I have experienced this a couple of times. 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 need 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. I would however go to the class alright, but I would sit down and watch my classmates enjoy themselves on the field. One particular day, my teacher didn’t understand why i was not participating, maybe she forgot, I don’t know. Unfortunately, I was 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 workout to keep fit, but deep down I knew I couldn’t work out as much as others. In our discussions about exercising I would share my thoughts about exercises I could not do. However, I realized that a few people always argued with me and held the view that I was being lazy and giving excuses. It was like a trial with me constantly defending myself because outwardly they saw me as somebody who should be able to do everything, but the truth is…I just 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 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 to calm to be in pain, so it took them almost an hour in the waiting room before I was attended to. Whaat happened after, is another story that I already shared in a previous post. So, when I say I am in pain, or I need your help…believe me.
When I say I am in pain, or I need your help…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.