PEOPLE SAY I’M USING MY HEALTH AS AN EXCUSE

I fell into depression in May. I was already losing my mobility. I was confused about how to graduate with a chronic illness and a mobility issue. I have been sick throughout my university education and it would be a lot to still not graduate despite my resilience. 

Sickle cell disease has been a very strong part of my education. I have to consider my energy levels before going out to class. I don’t take some courses because of their demands. Eighty per cent of my academics is dependent on my health. 

Before I started using a mobility aid, I could walk short distances across campus. But with the aid, I have to take a tricycle every time. In my school, everyone has to queue at the car park until there’s three people going the same route. If you can’t wait, you take a drop. I can’t stand for long, so I always take a drop. 

I’ve missed so many classes and tests. When I was in 200 level, I spent a month in the hospital. Upon resuming, I wrote letter upon letter so I could be allowed to rewrite missed tests and catch up with school. I have also missed several opportunities. Earlier this year, there was a class trip abroad I was supposed to go on, but I couldn’t make it because I missed the exam required for the trip.

I have lecturers who have been very good to me. I’ve also had coursemates who come over to my place to help me. But I didn’t have this help at first. I had to be open about my health. So, when someone sees me, they can help because they know what I’m going through. It makes my life easier to some extent. 

The university has not provided any inclusive thing for me. Though it has provisions for people with visual disabilities, there are no clear rules for what people like me, who have sickle cell, should do. At the university clinic, I am treated like any other student who has to wait long hours before receiving care, even when I have a crisis.

Life is quite unpredictable. In 100 level, I didn’t have mobility issues, but now I do. That’s why there should be a database that identifies and protects students with chronic illnesses, and it should be regularly updated. If I have a chronic condition, I shouldn’t be standing long at the park. There should be a tag on my ID card so drivers can recognise and prioritise me. At Jaja (the school clinic), they should know too, so I don’t have to explain every time. 

It is even worse that we, sickle cell warriors, experience stigma in the hospital. One of the obvious complications of this disease is pain, I mean crazy pain. But there is a notion in the hospital that sickle cell warriors are drug addicts. If I have a crisis and I enter a hospital and name a drug that makes me better, I’d become an addict like that. I’m seen as someone who’s been buying and using. Whereas I simply know my drugs and what works for me. 

Also, there’s this perception of laziness, but I don’t even get bothered. They say we are lazy. Mind you, we function on low blood levels with PCV of 16 or 17, while others have 35 or 40. Of course, we’ll get tired faster. People ask me questions like “What happened to you again? What’s wrong with you again?” But I wish they would stop asking such questions. It is a chronic illness that does not disappear.  

With all of these, I still miss out on many activities. I’ve not been able to attend any wedding I was invited to. Every time I planned to attend, I would have a crisis. And people say things like, “You’re using your health as an excuse.” 

For discrimination and stigma, a nje l’ojojumo ni [we eat it every day]. When it comes to relationships, there’s so much stigma in the dating pool. People don’t want to date or marry those with SS. Once you mention your genotype, they just run away.

As narrated by: Hibbatullah Akinkunmi (Ibadan, Nigeria).

This snippet is published as part of the series, Beyond What You See.