The Pain I Have to Deal With

Content Note: This article alludes to suicide. If you or a loved one are struggling, consider reading our mental health resources page.

A constant battle

I am tired of being a warrior. At this point, I’ll give anything to be a normal human being so I can live my life to the fullest.

Sickle cell restricts my life and that annoys me to the core. There are so many times I want to travel, play, fetch my own water... You know, just do basic things for myself, but I can’t. This is so frustrating for me.

I have tried to look at the bright side of life and keep encouraging myself as a warrior should, but this does not always work. As much as I pretend to be okay and happy all the time, deep inside, I am dying and frustrated because of this disease that I can no longer bear.

Why should I suffer all my life for my parent's mistake? Why should I endure all this pain and torture forever? Why can’t I be normal like everyone else? How long do I have to keep up with this torture? How long?

I try, trust me I do. Accepting this disease was tough for me but I managed to push through. Living with it for over 25 years has been really, really tough but I managed to endure it till now. Coping with the pain and expenses has been nothing but impossible, but I somehow managed to keep up and take care of myself. So pardon me if I lash out sometimes because living with sickle cell has brought me so much pain, losses, agony, and bankruptcy.

Trying to stay positive

We are taught to keep going and never give up. We are taught to strive and work hard so we can achieve. But what happens to those of us who are not strong enough to work hard and keep going? Are we then labeled outcasts? Do we not belong to society because we are different?

There are so many times I pray for death to come to take me away so I can have some peace and be free from all this torture and pain. The pain I have to deal with is just too much for me to bear alone. I am tired.

I know how hard it is to live with sickle cell because I’ve experienced how brutal it can be. There are times I will be sick for a while 6 months and my entire life and world come to a standstill. How do I cope in a world where I can’t do regular jobs for money to take care of myself but need to spend money that I don’t have on my health? How does that even work?

My mental health is not even in the right place because I have to deal with all these things at the same time. I recently got diagnosed with bipolar disorder and this has only added to my many problems.

Feeling hopeless with sickle cell

If tomorrow I lose my battle with depression, I hope I am understood. If I lose my battle with depression, I hope I’m not judged for it. This life is already hard. Adding sickle cell and bipolar disorder to it is just too much for me to handle, and I am beginning to lose it.

As much as I try to be strong for myself and keep going, the reality of sickle cell dawns on me sometimes and I can’t control the thoughts. Especially when the people around me say things like "you would have been better off dead”.

Sickle cell sucks and it’s time we stop downsizing the negative effects it has on our lives as warriors. Being a warrior doesn’t mean I don’t have bad days where I actually wish death for myself.

Speaking up is hard, especially because the stigma around sickle cell is still strong. As more education is going out to educate others, so does your voice and experiences need to be included.

So as a warrior, speaking up is your duty and obligation. Let the world know how you truly feel living with sickle cell. Not just how you try to get on with life, but how it affects your daily lives. Learn to speak without fear, for that is the only way we will get the treatment we deserve.