Sickle cell anaemia is a is a disease affecting the red blood cells causing them to be a crescent, ‘sickle’ shape. This causes oxygen in the blood to be chronically low, potentially damaging nerves and organs. Furthermore, sickle cells can block blood flow by getting stuck in small blood vessels, depriving them of oxygen and causing periods of extreme pain called vaso-occlusive episodes (VOE) which necessitates regular blood transfusions. 

Sickle cell anaemia affects 12-15,000 individuals in the UK and is the most common genetic disorder in the world, primarily affecting people of African and Afro-Carribean origin. This is due to the history of malaria; the shape of sickle cells allows protection against malaria. However, due to population migration, sickle cell is a cause for concern worldwide.  

Stephanie, Vice Chair of Red Cells R Us – a sickle cell and thalassemia support group, visited the University of Brighton to share her experience as an individual with sickle cell to healthcare students. We had the wonderful opportunity of interviewing Stephanie to provide a more insightful introspection on living life with the illness, and her perspective of treatment within the NHS

How does sickle cell affect your daily life? 

Sometimes I wake up in the morning and I am in pain despite feeling well the night before. I am constantly tired and people don‘t understand why. Regarding day-to-day life, there are certain days where I will feel better so I will try and do a large number of things on that day. Even if I feel tired at the end of the day, there is a sense of accomplishment. I did that. I’m fine and I’m happy.  

I also try to plan as much as possible, making plans after I’ve had my transfusions or even the following week, to have as much energy as I can. Every day is a challenge. But I have known nothing else; I didn’t develop this illness. This is my whole life and, in the simplest way possible, you learn to just get on with it.

Have you had people who don’t understand what you are going through? 

Yes, in the past when I was younger and it was really hard to reconcile. There has also been difficulty in romantic relationships. The first time it happened I was 20 and I remember crying. 

There is a large stigma around sickle cell. I have heard people say don’t be with someone who has sickle cell and it really upsets me. I’ve done so much with my life and with this illness. It is hard when people say they don’t want to be in your life and support you, especially when they view you as a ‘damsel in distress’ and I’m not that. 

As I have gotten older, people leave your life, and it can be no fault of your own. I don’t want people in my life who can’t be supportive and don’t want to understand my illness. Looking back, I’m glad it didn’t work out because I don’t want to be with someone or be friends with someone who makes me feel lesser because of something I can’t control.

What is your experience in healthcare as a black woman in this country? 

Being a black woman with a disability, I often feel like I’m at the bottom of the barrel. Even before entering a hospital, I’m worried about how I am going to be perceived and it leads to anxiety because I don’t know what I am going to experience there. I cannot be loud, and I cannot show pain because, if I do, they will call me aggressive and difficult when that is not who I am. While I may be ‘short’ with a healthcare professional, it is not a personal attack; I am just in a lot of pain. I wish people just thought about how they would want to be spoken to when they’re in pain.

Sometimes people in healthcare are so bogged down with ‘ABCDE’ and following a strict protocol, they forget they don’t have to follow every instruction right away. I can’t deal with their questions in the moment, but I can after my pain relief.

It makes me wish I could get my morphine delivered to my house and administer it myself because it’s tough to deal with these experiences again and again. 

As a black woman it is hard because you must constantly be aware and alert. You cannot react in a certain way to someone who is racist to you because you will be deemed an angry black woman. I become ‘that girl’ and ‘the junkie’. It shouldn’t be like that. I cannot control being treated a certain way because of the colour of my skin and it can be really upsetting knowing when I’m trying to access healthcare and I can’t because I’m scared of what is going to happen or how I am going to be perceived.  

For example, last year, my sister and I went to A&E together. My sister was on her phone and I was inside the cubicle with the curtains covering my face. A nurse came up to us and told my sister to sit down because she is frightening patients. Even the patients were confused because my sister was not behaving aggressively in any manner. Another nurse comes in later to give me medication and the first nurse repeats what she had said earlier and tells her we need to leave as we’re being aggressive and threatening patients. How are you going to call me aggressive when you haven’t even seen my face? It’s scary being deemed something we’re not.

What advice would you give to someone who has recently been diagnosed with sickle cell? 

Living with sickle cell disease is a long hard road. However, if you have a good support system and good friends around you who don’t see you as lesser for your illness, it can make all the difference. Sometimes you will be inclined to blame yourself but it is important to remember it is not your fault.  

When I think about my parents, I know they must feel bad but I don’t hold them responsible. These are the cards you have been dealt with but you will find a way to survive and accomplish your goals. You are loved and you are more than just your illness.