When you have sickle cell it becomes extremely easy for doctors and nurses to accuse you of being addicted to morphine and strong pain relief.

When I was working in the hairdressers I was constantly going into crisis as it was quite physically demanding. I would find myself in A&E constantly which resulted in me being reluctantly admitted as I didn’t want to keep missing work. Constantly being admitted was a living nightmare and has scarred me for a really long time. I couldn’t take my character and my reason for being admitted being questioned. It’s still something that bothers me till this day.

I think that it’s easier to mark every sickle cell patient with the same brush based on one patient or one experience which is extremely unfair. I was accused of coming into hospital because I was an addict when in reality, I hated having to be in hospital, they are my worst experiences of my life thus far.

It was awful being a teenager and having to be in hospital for long periods of time. When I refused hydroxyurea because of some of my friends experiences that became “well you must enjoy coming to hospital”. Being in hospital so much ruined my late teens and early twenties. I missed out on everything, all the normal things your average teen/twenty year old gets up to.

I had to wake up to my reality and what that really means. It was extremely hard learning my limitations but also listening to them and what my body could or couldn’t do anymore. I had to start listening to my body and really pay attention to how it reacted to everything. I slowly became a recluse as I became so wary of everything and cautious of things that could trigger a crisis which slowly felt like everything. I honestly don’t remember what it feels like to be care free because I’ve been this way for so long now.

Aliya (find more from Aliya on Instagram: @stylemealiya)