If one lives with Sickle Cell Disease, I can assure you that the disease will test one, at some point in life.
I mean to say, it is very easy to be sick for months on end. I get emails from a lot of people all over the world asking about living with Sickle Cell Disease and how they have either spent a lot of money on themselves due to this disease or how their birth family have spent a lot on them, and they feel sad about it.
There is no doubt that living with SC can cost a lot of money and care.
I received an email recently. The contents got me thinking as the writer spoke about feeling guilty, sorry, and fed up with the help the writer was receiving. I’ll talk through each feeling below.
I look at the issue of guilt slightly differently because I did not purposefully become sick.
Mind you, I remember when I was in my teens and my parents would warn me, that maybe, I was doing too much or going out a lot.
I remember because some days later, I would then have a crisis.
Since Nigerian mothers have no chill. My mother would remind me that she had warned me this was where I was going to end up – sick and in bed.
She would go about her business around the house, irritated at how this child (me) did not listen to her.
I would be in bed, crying my heart out in pain. Eventually, she would come and attend to me. But on the whole, SC gives no warning and one can have a crisis at any time.
It is easy when one is living with a long-term disability to want to be alone or to isolate oneself, perhaps unconsciously from other people.
No matter what, this is the last thing that one should do.
Having a core set of people that one can call on when sick is very important. The reason this is important is because when one is not well, one might want different types of friends to play various roles in one’s life.
So, for example, you might want to have a friend who cracks jokes around you so that you can just take your mind off the pain that you’re going through.
Now the issue about feeling sorry is a big one.
I’m not talking, or the writer wasn’t referring to feeling sorry for oneself. But it was more about feeling sorry on behalf of one’s family members and friends who are one’s support system.
When one is having a crisis, one is going through an immensely tough time inside one’s body. And yet, one’s spirit and soul are very much intact.
So, one can see how pained, distressed, and helpless one’s support group is, and one cannot do anything about it because one is in excruciating pain.
This has happened to me several times over the years because I want to say to that friend that I’ll be ok and yet I am not okay physically, and worst of all, I’m unable to express what I want to say because I’m in that much agony pain wise.
The last thing that this writer mentioned was feeling fed up.
This is also another sentiment that people living with SC relate to. People living with sickle cell are affected by it individually.
There is no ‘one size fits all,’ when it comes to SC. Some people might have a painful crisis called Vasco-occlusive crisis just for a few hours or a day, and after that, they are well and back on their feet. Some might have a crisis for a couple of days, a week, a month, and longer than that.
So those who get fed up are most probably those who have it longer than a month or those dealing with some Sickle cell complications.
Yes, some people have pain crises for four to five weeks or longer than that. I’m sure it is hard to imagine how anyone could survive such.
When one has a crisis that goes on for well over four weeks, there is no way that person would not become despondent and have feelings of frustration to the point of being fed up with life in general.
On a personal note, ‘my tribe,’ are all over the world. These are family members, my church family, and friends whom I can call on when I need help and I can’t cope on my own.
I have those in my tribe who are happy to do some shopping for me. Others are there to listen to my feeling sorry for myself. Others encourage me.
I have those who are ready to cook for me and bring the food over.
I have others who can do more than one thing. I have those who will look at the smallest detail, for example, come and massage my body.
I have those who would financially treat me to a manicure. I also have those who would offer to drive me someplace.
The common bond that I and my tribe have is God.
So, amid the upheaval that is Sickle cell, I have them all praying for me.
Going back to the title of my message, having people around you is necessary so that you don’t go through the various situations mentioned above on your own.
It is also crucial to have people around you, so you don’t entertain all manner of negative thoughts too.
If one decides to isolate oneself from people because of SC, then one would be affected adversely – emotionally and psychologically.
This is why it is important to have people around one if SC affects one regularly.
Until next time.
If you would like to get in touch with me about Sickle cell, do so, via – email: [email protected]. And do checkout my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.
