Fight of a Warrior
The fight warriors fight is a hundred percent underrated if you ask me. Especially for those of us with the SS genotype. From the intense pain to organ damages, bankruptcy, and everything else that has got to do with sickle cell. We try, trust me we try.
The stigma of our pain
For instance, today I had to correct a nurse who said I’m not in pain, simply because I wasn’t screaming and crying my lungs out. The next thing she said was, I know how your pain is.
First of all ma’am, you do not know how my pain is because you don’t have sickle cell, and secondly because you are not in my body. My mum wanted to shut me down but I immediately responded with “No, she needs to know our truth”.
One of the most frustrating things about the sickle cell is how people think they can rate our pain for us. Sometimes I don’t blame them, it’s because we don’t let them know our truth. More warriors need to learn how to speak up and speak out for themselves.
Advocating for change
As an advocate, I can do my best, but all warriors are not the same. Take for instance the nurse I corrected, she immediately apologized and corrected herself. Yes, others may get offended, but that should not be your concern and neither is it your job to care about that. Your job is to advocate for yourself and that is on period.
I was having a discussion with a warrior's mum about how badly we get treated in society and our greatest worry was the children. Our children. What happens to them if we remain quiet and do nothing about this injustice we all go through and suffer in silence?
I’ve made a few investigations and found heartbreaking incidents happening to warriors over and over again. Visiting the hospital multiple times in a month, not being able to go according to schedules, starting over and over again that it becomes so draining at times.
This fight is for a lifetime, my brothers and sisters. It’s the only way to win the medal of being called a sickle cell warrior is when you step up in all your struggles and adjustments, fear and love, yet it didn’t break you. Even if it did at a point, it’s okay. We understand together.
We're in this together
I must apologize for being blunt, but warriors fight until the end. What justifies the end is different for everyone but we are in pain and torture together. Think about other warriors often, sometimes all someone may need to keep it going is to have a friend that relates. I am so grateful to sickle-cell.com for doing their best to connect us.
I am so sorry for all you go through on your own. I am sorry that you felt you had no one to understand the pain you’ve endured all of your life. It might be a little late now, but I’m here for you until I lose my fight too. But don’t quit on us. If 2 heads are really better than one then we need to be there for one another. On both the good days and bad days. Even if you are too afraid to explain yourself to others, I don’t think your fellow warrior should be on the list.
I may not get it all or feel it all with you, but I’m always here if you need me as long as I can find the strength to be there for you. We can only try and hope to achieve something beyond the ordinary. But if that doesn’t happen, know that knowing you was all I needed to keep going. Please forgive others who are unable to be sympathetic to you when you need them the most, and try to appreciate the few that love you for who you are and that is on period. Don’t give up, we have a lot to do together.
Have you had a special caregiver in your life?