Lamine’s story highlights living with sickle cell

A service user’s powerful story and poem are helping raise awareness of sickle cell disease and the importance of psychological support, shared through the Thinking Together Forum, a space where patients and NHS staff work together to improve services.

Lamine, who has lived with sickle cell since the age of two, spoke about the intense physical pain and emotional challenges he has faced, including childhood bullying and severe health crises.

“The pain is excruciating,” he said. “One moment you can be fine, and the next hour the pain arrives.”

He credits psychological therapy as a turning point, helping him manage pain, overcome depression and rebuild hope. As part of his journey, he wrote a poem, “You Will Never Break Me”, expressing his resilience and determination.

His story highlights the often-overlooked psychological impact of sickle cell anaemia, a serious inherited blood disorder that can cause severe pain and complications.

Specialist care is available locally through the Haemoglobinopathies Service at Queen’s Hospital. NELFT also provides dedicated psychological support to help patients manage anxiety, trauma and other challenges, with a focus on improving wellbeing and resilience.

Patients can speak to their healthcare professional about a referral to the NELFT service.

Lamine’s story is a reminder that with the right support, people living with sickle cell can build strength, resilience and hope for the future.

 

Lamine’s Poem: “You will never break me”

At first, I didn’t know what you were and where you come from

You’ve tortured me to bring of death whenever you come

But you wouldn't let me die

Because you need me alive to repeat the cycle of torture

Helplessly, couldn't fight you, I mean how do you fight an invisible thing

Not knowing who or what really are

I neither know your strengths nor your weaknesses

But I will never relent or give up

I will fight you with my mind, my strength

My resilience and my eagerness to survive will trump over you

But then I learned what you really are…

A disease in sickle shape that invaded my body like virus

You controlled most of my life

I was your prisoner

You kept me out of the world and stopped me from living a wonderful life,

But I will break the chain that you bind me with

Now I will confront you with every ounce of strength and will until you are gone

You might come back, but I will be here

I promise you I will fight you

With everything I got

And I will triumph

Even though it may take sometime

 

And at the end of the day, I will be victorious because I'm stronger than you

Because I have a lot to live for

I will spread my wings and fly away

Like a bird freed from a cage

Given a new lease of life

 

For a referral to the Sickle Cell and Thalassaemia Psychological Service, please ask your Consultant/Specialist SC&T Nurse at Haemoglobin Disorders Service, Queen’s Hospital, BHRUT, Tel: 0208 970 8301.