We still Hope
It deeply saddens me that there are so many of us who still suffer in silence. I know what its like to feel like you are all alone in the struggle to be well, maintain, manage and cope with having SC. I understand the constant battle to live a 'normal', productive and uninterrupted life.
Likewise, I also know that it can be difficult to keep a positive attitude. To focus on what is good and right in your life instead of the pain and what you may feel is wrong in your life. It's not easy being a soldier...a warrior. Its not easy to be of sound mind and good spirit when you are in pain. I identify all too well. Sometimes it's hard to not focus on what you are feeling at the moment.
Even on your best day, no matter how well you may happen to be at the moment, it can be hard to be hopeful or thankful that, at least for the moment, sickle cell is not in control. There are "those days"...those days when you feel as though the burden is much too heavy - days when you grapple with who you really are and how you really live and cope with sickle cell.
Only someone who has SC can ever really know what its like to live with sickle cell. SC can wreak havoc on the psyche...it's so much more than the physical...it's the emotional and mental as well. Who knows this better than another SC sufferer? It was revealed to me in recent conversations that even though SC affects each of us differently, we are so much more alike than not. We have the same stories. We share so many similar experiences. None of us are ever really alone in our thoughts and feelings. I am so grateful for social networking!
Back in the day - in the 80's when I suffered most severely - when SC controlled my life...my every move - there wasn't anything close to what this website has come to be. There were no support groups, that I knew of...websites didn't exist back then. There was nothing. Nada. I had nobody to talk to about how I felt or what I was going through in my head. Nobody knew how horrific the pain could be. There was nothing in place like this network. No place to communicate, share thoughts and feelings or information on current treatments or resources, studies and support services. No place to connect with other People Living With Sickle Cell. I mean, there was nothing out there like this. Although, honestly speaking, I probably wouldn't have taken advantage of it anyway because I was so far from where I stand and how I feel about my life and sickle cell.
Back then, during my lonliest moments, I was so ashamed, angry and depressed about having sickle cell. I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life. I hated acknowledging SC in any way, much less talking about it.
I've come a long way from being the self-pitying, insecure, angry, self-loathing individual I used to be. A looooong way.
Today I stand Strong and Unashamed. Open. I am okay with being me ;-) Today I can talk about sickle cell openly and honestly. I thank God that today, I know that I am not defined by sickle cell and I am not alone. Today, I share my journey and experiences to let my fellow soldiers know that they are not alone either. I need my fellow soldiers to know that there isn't a thought, concern or feeling that can't be identified with by somebody else...so you can never truly be alone in your thoughts and feelings, but it is important that we speak up...that we Say Something.
(Especially those of us who have been coping with this thing longer than our younger sistas and brothas...those of us in our 30's and 40's. Times have changed but those very feelings that we felt before we learned to better manage, are the very same feelings that our young people feel today. We owe it to share with them how we got through. We have to encourage them to strive to be better. To live better. We have to be examples and give them hope...to help them see that they are so much more than sickle cell.)
It is important that we all Say Something. We all have Something to Say. There is no reason for any of us to ever have to feel alone in this fight again. Say Something. No matter how 'crazy' or 'odd' you think it might be. Somebody else gets it.
When you are having a bad day Say Something. Get it out.
Write it down in a journal...just Say Something. Don't hold it in. You are not alone. Somebody has been where you are.Somebody is going where you've been.
Not only will Saying Something help you to feel better, it can also affect the way someone else might be feeling at that very moment. Talk about it. Say Something.
Comment
© 2024 Created by Ade Dotun. Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
You need to be a member of Sikcell: People living with Sickle Cell to add comments!
Join Sikcell: People living with Sickle Cell