A warrior kneels with their armor, cape and sword.

The People We Keep in Our Lives

Sickle cell is always up for emergencies. Most of the things that trigger a crisis are things beyond our control. Even though we do our best to avoid getting sick, weather, emotions, and other things are unavoidable. Taking precautions is just not enough.

Being sick isn't being lazy

I have realized that most people think sickle cell is only about the crises and pain. Others think it’s rheumatism and that’s it. So when there is no pain but you’re too weak to do anything, it’s called being "lazy". It’s really sad that to date, we are blamed for getting sick because we occasionally break the rules.

We're not robots and it's not our fault

For instance, if I have a crisis after skipping my morning pills, it is assumed that I became sick because of that. Completely ignoring that it rained the same day and I also cried. If only they knew what it took to be a warrior. In recent times, robots have been made to do multiple tasks at once without stress. Why the tasks meant for robots are given to a human, like me, I’m still trying to find out.

Being there for myself

The more I get sick, the weaker my body becomes, the less attention I receive, and the less care I get. Over time, I've learned to be there for myself. Expecting help from no one because I do it alone most times anyway.

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Feeling isolated

I must admit it breaks my heart sometimes when I’m critically ill and around me is no one I wish was there. I know the reasons are well-justified and I understand, especially because of the distance between my loved ones and me. It is difficult because they have jobs that won’t even understand that they need time off. Besides, there is really nothing for them to do other than help me with errands and bills. Yes, I know and understand all this. But still, I’m only human.

Moving away from home

When I moved to Accra with my mum because of the bad weather conditions for me in Tamale, I hated the fact that I was separating from my dad. Somehow, I knew deep inside that I would hardly see him. Although it saddened my heart, I prepared myself for it. I always tell the world about my super dad, he always goes out of his way, but most of the time he has no choice.

In the beginning, my dad would always rush to Accra when I got hospitalized. With time he would miss some and finally, not show up at all. As prepared as I was, I couldn’t quench the anger. Why can’t he be here?

No one is a robot

The anger was mostly because I felt like it was his fault I was there in the first place and then he won’t even show up? With time, I learned to let go of that idea and it made it easier for me to listen to them too. It’s a sacrifice I need to make as a warrior. And just as I’m no robot, my parents and loved ones aren’t either.

Struggling with difficult emotions

What do you do when the thought of being irrelevant to the very people that put you there? Do you resent them for it? How do you handle disappointment when you needed that help the most? How bad has it affected your relationship with others and how has it changed you?

Questioning yourself all the time is not abnormal. Especially when you live with sickle cell. The constant and unplanned hospitalizations and illnesses make you wonder all the time. But how do you control them so it does not destroy you? But before you lash out, take a moment to consider these:

A letter to my fellow warriors:

Dear Warrior,

People can only help as much as they can. Family or not, everyone is on a different journey in life, therefore, do not expect people to put their lives on hold for you all the time. They have lives too.

    1. Bearing the title as a warrior means that you fight no matter what and the only thing that can stop you is the day you take your last breath. Imagine a soldier returning home from battle because he got ant bites from laying an ambush. Silly right?
    2. Learn to take disappointments with a pinch of salt as you disappoint others too. Sometimes, no matter how much they want to be there for you, the world simply doesn’t work that way.
    3. Don’t mistake presence for honest help. Most times, the people showing up for you every day only do it because of what they’ll get. It is not right to steal from a sick person but people do it anyway.
    4. Forgive and be open to starting again. Everyone deserves a second chance. This is not only for those who hurt you but for yourself, too. Forgive yourself after a fall, dust your armor and continue to fight. It’s always good to rest, take time and reorganize, but don’t take too long. Remember, tomorrow is not promised.
    5. Appreciate every effort made towards your healing. Sometimes, crisis periods can be very lonely and we forget everything else because all we crave is presence, attention, and care. Maybe your dad couldn’t come to the hospital, but he sent money for your bills, or called a friend so your hospital attendees are faster. Take the gift and ignore the fault.

If after all the considerations you’re not convinced to keep them in your life, feel free to cut off and move on without them. At the end of the day, you are the author of your own story.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Sickle-Cell.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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