Mental Health, Sickle Cell and the Weight I Carry

As it is Mental Health Awareness Month, I wanted to pay homage to my own mental health journey and the parts of it that have shaped me.

My struggles did not begin overnight. They started when I was younger, during my school years, while trying to understand myself, my sickle cell, and the way people treated me because of what they did not understand. As I got older, especially through some of the things I have experienced in the UK, that weight doubled and, at times, tripled.

My healing has not been perfect, but it truly began when I started trusting God. There was a time when I was sectioned in a mental health hospital, and although I may speak about that properly one day when I am ready and at peace with it, I now believe God allowed it for my own good and safety.

This post is about sickle cell, mental health, repeated pain, and the emotional weight of trying to stay strong while still being human.

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When the hospital stay ends, the pain does not always end with it

I have been in hospital for two weeks and one day.

The beginning of my stay was harsh, and the end of it felt almost impossible. But then again, the end of my hospital stays often feels like that. There is something that seems to change towards the end. The kindness starts to fade. The patience starts to thin. The comments begin. The looks begin. The questions begin. And suddenly, I feel like I am no longer a patient in pain. I feel like I am a problem they are tired of dealing with.

This time, I am angry.

I am angry because I do not know who to trust anymore. I am angry because I went into hospital needing help, and I am leaving with my guard up. I am angry because this experience has made me feel the way I felt when I was younger and being bullied by people who did not understand sickle cell, and did not want to understand it either.

One of the hardest parts of living with sickle cell is the battle that happens before anyone even sees you.

Before I leave the house, before I call an ambulance, before I get to A&E, there is already a fight going on inside my mind. I am not only thinking about the pain. I am thinking about how I might be treated. I am wondering whether the ambulance crew will believe me. I am wondering whether A&E staff will take me seriously. I am preparing myself for the ward, for the doctors, for the nurses, for the comments, for the assumptions, for the moments where I will have to explain myself all over again.

And still, I know I cannot stay at home in the level of pain I am in.

This time, my A&E experience was not ideal, but what I really want to talk about is how this admission ended.

I am someone who hates crying in front of people. I do not like people seeing me break down. I put on a brave face. I act like everything is fine. When people ask me how I am, even my dad, I say, “I’m fine.” I am always “fine.” Even when I am not.

At first, the nurses were kind and polite. I started to feel like maybe I could relax a little. Maybe I could trust people. Maybe I could be vulnerable. But slowly, things changed.

The comments started.

“You were in so much pain last week, look at you now.”

“You look so much better now.”

Comments like that might sound harmless to some people, but when you have been crying for six hours asking for medication, when you are still in pain, when you are trying your hardest just to survive the day, those comments do not feel harmless. They feel like accusations. They make you feel like you have to defend your pain. They make you feel like people are questioning whether you are really sick.

And when I finally got medication, the torment did not stop.

There is something to be said about the way some sickle cell patients are treated towards the end of a hospital stay. It is almost as if once you start to look a little better, people forget that sickle cell pain does not always show on the outside. They forget that looking better does not mean the pain has gone. They forget that smiling, speaking, walking or sitting up does not mean you are not suffering.

Simple comments and questions can make you feel like you are on trial.

Like you have to prove you are not lying.

Like you have to prove you are not exaggerating.

Like you have to prove you deserve care.

And that is exhausting.

I make a point to be respectful. I say please and thank you every time someone gives me medication, checks my temperature, takes my blood pressure, brings me something, or even just comes into the room. I know staff are busy. I know the NHS is stretched. I know people are tired. But being busy does not give anyone the right to make a patient feel small.

There were moments where I felt like my pain did not matter. Like my feelings did not matter. Like I was the dirt at the bottom of someone’s shoe.

That might sound dramatic, but that is honestly how it felt.

When people stand in front of you and ask questions in a way that suggests they do not believe your pain, it does something to you. When buzzers are ignored because people are not in the mood to deal with you, it does something to you. When jokes are made and people laugh at your expense, it does something to you.

I have lived with sickle cell for 26 years. I know my body. I know when I am getting better. I know when I am well enough to go home. I know when something is wrong. But every admission seems to come with the same emotional pattern. Staff can be kind in the beginning, and you start to think you are safe. You start to think maybe this time will be different. Then slowly, you are made to feel like a burden again.

And that is what hurts.

Because sickle cell is already painful enough. We should not have to carry the extra pain of not being believed. We should not have to prepare ourselves for mistreatment before we even ask for help. We should not have to be polite, grateful, quiet and strong just to be treated with basic dignity.

This hospital stay reminded me why so many sickle cell patients hate going into hospital, even when we know we need pain relief.

It reminded me why we wait until the pain is unbearable before we ask for help.

It reminded me why we cry in silence.

It reminded me why we say we are fine when we are not.

And it reminded me how lonely this journey can feel.

I am still processing everything. I am still angry. I am still hurt. I am still trying to understand how a place that is meant to help you heal can sometimes leave you feeling more guarded than when you arrived.

But I am writing this because people need to understand that sickle cell care is not just about medication. It is about being believed. It is about being treated like a human being. It is about dignity. It is about compassion. It is about understanding that pain does not have to be visible to be real.

And for those of us living with sickle cell, the emotional wounds can last long after the crisis has passed.