In a nutshell
Sickle cell disease (SCD) is a group of inherited (genetic) conditions which affects the red blood cells in the blood. Certain condition causes the cells to sickle, leading to a block in the vessels, and to a painful crisis.
Overview
Living with Sickle cell disease (SCD) can be very challenging for so many reasons.
Speaking from experience, being born with a disease you initially knew nothing about, and still learning about, can be very difficult. For the most part, you find yourself learning things on the go, or just doing what you’ve been told.
Sometimes, on the flip side one can decide not to follow any instructions out of frustration or simply just tiredness.
Going through these emotions without a proper outlet, can be very detrimental to one’s overall wellbeing and balance.
Growing up, there wasn’t really anyone to validate my feelings (the anger, frustration and resistance). Most times all that was said was drink water, take your drugs and things like that.
The phases that I went through, which I have now realized happens to a lot of sickle cell patients, is mostly due to the lack in communication, teaching/education, and proper outlets/care of the mental health.
Thankfully, now a lot of things are changing and people are able to discuss more but, in our society, this is still lacking a lot and there’s still much to be done.
Phases?
The emotional phases of sickle cell disease can be very daunting, and it is very important to have someone to discuss your feelings with. We would take about the phases, and some measures we can take to going through them better. Most of these phases can be grouped/named differently, but most of the emotions remain the same.
It is also important to note that, some people might not experience this, and other might skip some phases.
These phases don’t always happen in sequence.
‘’The first and most important thing to know, is that your feelings are valid, and there’s nothing wrong with you. Neither did you do anything to deserve this’’.
What are the Phases?
Unspecified- This is like an unknown phase. This is the first emotion most people experience. This happens at the initial stages of living with SCD.
This is the young/childhood period. It’s unspecified, because you really don’t know what’s going on, all you know is you fall sick a lot. You might not even notice that it isn’t the norm.
Tip: This is really young and quite early, but the best tip is to relax/take a deep breath.
Comply- When talking about comply, this is really just about doing what you’re told. Most times, little to no personal knowledge is known at this time. You’ve been told why you fall sick a lot, why you are ‘’different’’ from your sister, every other friend, classmate, etc.
You’re being told what you need to do, what you can’t do, why you can’t do them. You follow the rules, and blame yourself when you fall sick. This stage usually occurs in late childhood.
Tip: Obtain more knowledge, get to know more earlier and have a sense of control.
Anger- This stage, comes with gradually entering the teenage years. It is filled with anger, and sometimes, resentment. You’re not sure what you did, and why it seems like you’re being punished.
There are all sorts of emotions running through your mind at this stage. It is very importance to have a conversation with your support system during this period.
It is vital for once feelings to be validated. Unvalidated feelings and inadequate conversations can learn to depression, and isolation.
Tip: Conversation, conversation, conversation
Avoidance- I can remember my avoidance stage, I didn’t want to be associated with anything sickle cell disease, I didn’t want to hear it, read it, talk about it, in anyway, shape or form.
I was very conscious about staying as far away from SCD as possible. Just hearing it, made me cringe.
I didn’t want to acknowledge that it existed, not just for me but in the whole world.
I created a ‘’safe’’ sickle free zone but was it really safe? It was an illusion of safety.
Sometimes, in this phase, you find yourself even in denial.
Tip: Be easy on yourself, do no see yourself as a problem, the stigma, doesn’t define you. Know more, let yourself know more.
Acceptance-
Personal: This is a very beautiful phase. It is the first step of acceptance, one that occurs internally. It is the most importance type of acceptance. It is the point at which your view beings to change. You start seeing SCD as more than a weakness.
Most people struggle with realizing that this problem exist. Everyone likes to think that they accept themselves. In other to accept one’s self, you need to be honest about your struggles and challenges.
This is the I have sickle cell, so what?
Tip: Enjoy the process
Full: This is what I like to call ‘’standing in the sun’’. Embracing every aspect of what makes you, you.
Everyone decides how much further they like to take this step/live with this step.
Tip: Go at your pace
Next?
What happens next, is a choice only you can make. Whatever you decide to do, enjoy, relax and stand beautifully.
‘’Pay attention to your body, do what you’re supposed to do, and be honest’’.
By: Dr. Awunli Ivie Enebeli