Stop policing our bodies! Having sickle cell means everything you do is weighed up, judged, and observed, to try and come to the conclusion if we’re really in crisis.

When I would go into A&E, nurses would constantly watch me to see if I really was in crisis. If I went to the toilet, if I went on my phone, even if I sat up they would say “you must be feeling better”. It wasn’t what they said it was how they said it, the tone, facial expressions and body language to go with it. 55% of communication is non-verbal and it was easy to read in between the lines.

During hospital appointments it almost feels like they’re quizzing you. It’s really weird and hard to describe but it certainly doesn’t feel good, it feels like my words aren’t good enough or valued enough for you to believe what I’m saying. It can become really frustrating because you constantly feel under attack and not trusted.

I have never lied or exaggerated about my pain, my crisis or experiences, I have no reason to. When I experience these characteristics from doctors and nurses I begin to loose faith and trust in them and my guard goes up straight away because I feel like what’s the point of explaining myself, you’re not going to listen or believe me. They may listen but they don’t hear you so you get nowhere.

I’m not quite sure where this theory came from that sickle cell patients are lazy lying drug addicts but it’s so untrue and so damaging to us as it undermines what we go through and hugely effects our care and treatment.

My sickle cell experiences have made realise that it doesn’t matter what you do or say there are some doctors and nurses out there who have already made their mind made up about me and although it’s frustrating because I hate my character being questioned there isn’t much I can do to change it.

I just pray that my young #sicklecellfamily don’t have to go through this and things change. I continue to pray for your health happiness hope and strength Alhumdulilah 🙏🏾♥️

Aliya

(Find more from Aliya on Instagram: @stylemealiya)