A Note on Sickle Cell: A Portion of Humanity — A need to be treated with decency

We help again,

I have got a resounding response with my open letter about health and sickle cell and questions. I am thankful for the response to dose of optimism (If you haven’t read it already please do) its appreciated and I want to continue good word just helping people more informed.

With that, a response to the questions I got because people’s main response is ‘would never have guessed you have Sickle Cell.’

Life put a set of challenges in front of me us all. With me I had to grow and learn to solve those problems like an adult early on. I took time out to treat my body with a sense of dignity I’m not awarded in most places.

During my life I’ve had a really big problem with not being treated like a human when I have told people about my condition, doctors who are just in training getting along and had a 20 minute lecture on my condition that I’ve lived with for 20 years. I’ve had to become the master of my own body because if it’s left in someone else’s hands to take care of there’s a big chance it will be done without humanity.

Studies show that Sickle Cell patients get treated like drug addicts and are made to wait longer and have to go through more tests because the hospitals do not believe them

Studies from one hospital show , in a wait to get pain medication – Sickle Cell patients wait 60% longer than other patients who report suffering from less pain – 60%. Just in knowing the basics of the condition you will know that if I or somebody else attends the hospital due to a crisis, we have EXHAUSTED ALL RESOURCES at our disposal and the hospital is our last line of defence.

Some people just like me dress up to go to the hospital, not to keep warm to just look more presentable so that when a doctor or nurse will see us they don’t make a snap judgment past our condition.

Some women even believe that it’s their duty to even wear a full face of makeup to give that extra step of presentability.

It is know and a study on Junior doctors shared that they think Black People can handle pain more than any other race therefore we are put in a position to wait that little bit longer by people in the medical field especially black women

As Sickle Cell patients we are made to think steps ahead to ensure we are treated humanely in the stead of people that are supposed to treat us like humans no matter what.

I along with many other of my brothers and sisters despise not being treated like a human so we with will do whatever we’re told to not be put into the position of feeling less than that. We become our own doctors physicians and nutritionists to ensure we don’t have to make that dreaded hospital visit where we’re put in front of someone with only general knowledge in health and no specialised knowledge in haematology.

For all those that want to know where I got my information from here are some links that can help you in your own educational journey.

extra reading:‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside

further reading: Sickle cell patients face a ‘fight for everything’ — even attention

Further Reading: Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites.

Whatever Moves Your Dial

Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical


Thank You For Reading, Please read my. other Feature blogs:

A Dose of Optimism

Global Invisible Disease

Living Through Crisis

Addict Stigma // Opioid Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell


 

A Note On Sickle Cell: What Helped me Help Myself — A dose of optimism

We go for great,

I used to live my life reactionary to what people thought of my medical condition. I was used to it, so I disengaged early, I wanted to be a normal kid. I did grow curious, some part of me grew to seriously ask myself questions — wanting to understand if what people thought of me through the lens of my condition was the me I actually am — the look of like I’m suddenly part of a lower subset of human; the look of as if I live like a man on death row; the look of a decrepit helpless man. This is the look I find in their eyes.

All those looks were not controlled by me, it would have some very negative effects this fuelled me wanting to find the truth so I did my first ever “Google’s”. My first mistake, (never try find true documentation with the highest google answer). This would play on my mind for a while till I took a real look at what the findings were, I didn’t just search up on Wikipedia or the NHS website I would start to read medical journals and see how it is defined. My findings concluded, its not a death sentence.

(Even further I have come up with hypothesis on how to treat it; that is for another blog. )

How I saw myself looking after my body was different. I didn’t automatically start treating it like a temple. What I knew though is with strong bones, a strong body and cardio vascular system your quality of life will have levelled & or better than the next guy because sickle cell puts you in the position to have to live to a higher standard of nutrition as a basic prerequisite.

With all the people I have seen with the condition (numbering in the hundreds) those with less complaints eat a balanced diet go to the gym to move weights and don’t make reckless decisions, those with the best life have THE BEST LIFESTYLE. I want to stress it does not absolve crisis, it helps the pain tolerance to be higher because the body is generally in better shape and used to the stresses of those physical activities. So the friends that look ‘perfectly healthy’ will participate in sports activities and or socially drink and don’t “look like” they have sickle cell till they tell you look after themselves to a very high standard. Everyone though is healthy till they are not.

This means being an active participant in your health. I listen to my body and assess the situation, when I do that I have better control of my days. I’m not saying there aren’t days I can be gripped by pain, not at all. I know what’s best for me and what’s not so good for me when it comes to activity.

I feel great daily if I look after my body daily. This is something all of my brothers and sisters to know, I’m not the biggest guy but I started with the smallest weights and the shortest session but slowly year after year I gained more inner strength to compose myself and try out for my university Gymnastics team. Being very honest it was the best decision I made as an adult. Making sure within myself that this is my own body I own it, my identity is what I make of it, Sickle Cell is not me it exists while I’m alive but it will not condemn me to a life of fear and destitution.

If this makes sense pass it on, just like the death sentence disease idea that was probably passed on hand this piece of information over too, instead of looking at friends and family with desperate despair maybe this dose of optimism will do you all some good.

Whatever Moves Your Dial

Damilare. Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical

Thank You For Reading… Please read my Other Feature blogs:

Living Through Crisis

A Portion of Humanity

Global Invisible Disease

Addict Stigma // Opioid Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell