SICKLE CELL AND EMPATHY

Last week, I wrote about two young men who died and they both had sickle cell.  I know that many young people have died as a result of having a crisis.  It’s a tough one and as I was typing this, I was reminded of one aspect of self-care that I am passionate about and that is having a support system in place for when one needs it.

When someone is always sick, it gets to a point one does not want to tell people that one is unwell.  As a patient, you keep going and pushing yourself.  And sometimes, it is to one’s detriment.  My point in talking about this is to highlight the importance of having people who will be there for one when one has a crisis.

It is easy for medical teams and caregivers to minimise one’s pain however it is important to listen to the patient.  If I say that I am unwell or in pain and have to come to the hospital, do believe me instead of not accepting what I say.  I know for a fact that when I had a full-time job, going to the hospital was not a walk in the park for me.  I totally hated it and would only go as a last resort. Why? Well because, I would most probably be admitted and didn’t want that.  Till now, I don’t understand why we are not believed when we say that we are in a lot of pain?

Sometimes because one is used to going to the hospital alone, and I am talking about those who are grown enough to go out by themselves, we would sneak into the hospital without telling anyone.  We feel better that way because we do not want our loved ones worrying or saying things like ‘ha, you are sick again.’ Or ‘this sickle cell again.’ Or ‘your pain has started again.’  All the ‘agains’ in whatever way it is said, would make the patient feel that they are a burden to the household they live in and so the patients will keep quiet any other time that they are in pain and would silently go to the hospital without anyone knowing.  Or even worse, the sickle cell patient would stay home and not let anyone know they are sick.

A support system is a basic element of having firm connections that translates into robust psychological health.  A good support system will involve one having a network of family and friends that one can turn to in times of need.

Sometimes people who have sickle cell might want to be alone and not be around people because they are tired of their personal situation.  The thing is relationships occupy an essential part in how we act in our day-to-day lives.

Psychologists and mental health professionals would always discuss with a patient the significance of having a strong support system.  And that is why in some hospitals and advocacy groups, they organise monthly or quarterly peer-group support meetings, where the patient, care givers, members of the medical team and other support groups can attend as we all learn and share information from each other, in a relaxed atmosphere.  No matter how strong a person who has sickle cell may seem to you, try to offer some support in whatever way you can.

In recent years, there has been a lot of research, which has proven the connection involving social relationships leading to issues on health and wellness for the patients.

When one does not have a good support system in place, this has been linked to depression, loneliness and has shown to alter the brain function.  All this ultimately leads to a risk in the following: alcohol & substance misuse, cardiovascular disease, depression and possibly suicide.

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To loved ones and caregivers, can we be considerate in our choice of words too?  Can we be sensitive to someone else’s pain? Reminding someone, in a negative manner, who has a crisis regularly, all the time or sometimes about their ill-health is not a good thing because that person knows and is not happy about their life.

The other reason why I am talking about kindness is because I read a while back on someone’s post who has sickle cell on how he/she had a core group of friends who always drop whatever they are doing once the person is unwell. If I remember rightly, they all have a WhatsApp group and once their friend is sick and needs whatever, they would take it in turns to be with their friend immediately.

I remember reading it and thinking the person is truly blessed to have such devoted friends.  Anyone who would drop everything and visit their friend or family member who needs help is really a God-sent.  And that is precisely what every sickle cell patient needs. A group of friends or family members who can go with you to the hospital especially if you are having a crisis is a blessing to you.

If you suffer from sickle cell, you really do need to have a support system in place.  A support system is made up of individual people who provide support, respect and care.  These are people who are in your corner.  They do not judge or ridicule you.  They provide feedback that is genuine and in your best interest.  They are people who would go out of their way to do things for you.

I remember those days way back when I would be sick and my people would be around me or visit me in hospital.  What it does is that it helps me forget the pain that I was in and it also helped me from feeling sorry for myself.  They sit around me and crack jokes and talk about life. I listen as I forget the pain or forget that I am in hospital for the umpteen time that month or year.  I can assure you that having a support system builds a patient up during times of crises and this then gives the patient the inner resolve to face life, carry on and flourish.

~Tola Dehinde

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