Black Women Share The Unseen Suffering Of Sickle Cell Disease

Sometimes the chronic pain that Precious Gaza experiences is so severe that she has to be hospitalised. While she cries in agony and screams in pain, nurses tending to her sometimes question the severity of her sickle cell anaemia symptoms.  

“It’s hard to get people to understand the pain sufferers like me go through. I’m not visibly ill, so people often assume I'm healthy and well, and because I look fine my pain is downplayed,” Precious explains. “People sometimes think we are lazy or are just exaggerating about the pain.”

Those suffering from invisible health conditions like sickle cell disease are accustomed to this pernicious scepticism. Yet the stark reality is that this denial is further intensified for Black women and other women of colour. 

Black Equity Organisation commissioned a study that revealed how a significant number of Black people living in the UK face discrimination by healthcare professionals. Over 65% said that they had experienced prejudice from doctors and other staff in healthcare settings. And this figure increased among Black people aged 18 to 34 to 75%. 

Systemic racism is so deeply entrenched in our healthcare systems that it is leading to deadly consequences. Cue: the Black Maternity Scandal last year. Rochelle Humes went undercover with Channel 4 Dispatches to discover that Black women in the UK are four times more likely to die in pregnancy and childbirth than white women. 

Reflecting on these shocking statistics, Precious urges: “healthcare racism needs to be taken more seriously and formally addressed. It’s endangering lives and causing complications for people like me who just want to get better.”

Precious is just one of approximately 15,000 people suffering from sickle cell disease, an inherited blood disease prevalent in the Black community. At least 25% of West Africans and 10% of Afro-Caribbeans are affected, while it is uncommon amongst white Europeans. Those originating from the Mediterranean, Asia, and the Middle East are also more susceptible to the condition.  

As the fastest-growing genetic condition in the UK, the demand for blood donors in the Black community has increased significantly. Just recently, the NHS made an urgent call for blood donations from Black donors to help sickle cell patients. Often those from the same ethnic background are more likely to have the same blood groups. And for blood transfusions to work, you need well-matched blood groups. 

To address this demand, the NHS Blood and Transplant recently launched a new campaign titled ‘Not Family, But Blood’ to recruit more donors of Black heritage. 

Red blood cell transfusion treatments are essential for sickle cell sufferers to help treat and prevent their condition. These treatments decrease the concentration of sickle haemoglobin in a patient’s bloodstream, helping them to avoid any further health complications. 

Growing up, the fear of having an unexpected episode affected Precious’ ability to live an active social life. “As a child, I always had to shield myself to avoid risks to my health. I could never travel on my own and I couldn't go anywhere without a chaperone. Whether that’s through making friends or being unable to attend regular social events like birthday parties or sleepovers, she is always in fear of having an episode.”

When dating, she would worry about disclosing her health condition and being seen as a burden when a relationship would get serious. A crucial factor for people with sickle cell trait is that in case they may want children, they need to be aware of their partner’s genotype so they can ensure a healthy pregnancy. This is something she has had to always consider when getting into a serious relationship. 

Before she met her current partner, guys would assume that they’d have to become her primary caretaker. “A lot of people worry about the responsibilities and sacrifices they might have to make, so they back away. I'm lucky that I have finally found someone who truly loved me for me.”

Many suffering from health conditions like sickle cell also struggles to work typical 9-5 hours while handling chronic pain. It’s clear workplaces are failing those with chronic illnesses by not making the necessary arrangements to support them or, in most cases, just not hiring them. Out of fear of being seen as a liability, many like Previous suffer in silence. “For someone that has sickle cell, working 8 hours long every single day is not sustainable. I kept getting pushed out of jobs because I would have endless episodes, and this had a huge impact on me financially.”

This left her with no choice but to build her own business and become self-employed. Her previous employers have been unwilling to adjust working practices and she often found herself dismissed on the basis that her condition was too 'unpredictable.' 

Even when onboarding for a new role, Precious would go for medical examinations, and as soon as her sickle cell condition was identified, she’d be eliminated from an application round. “Sometimes they would make up an excuse or say that they don’t have the financial capacity to hire me.”  

Frustratingly, sickle cell awareness is low and often overlooked, unlike the more prominently known illnesses and diseases, like cancer and leukaemia. Concerted efforts have been made to change this, but they don’t go deep enough to create a true impact. September is recognised by many organisations, including the WHO (World Health Organisation) as Sickle Cell Awareness Month, but this month does little to give the condition visibility.  

"Sickle cell awareness often goes unseen. We need a bigger platform to raise funding, research, and a spotlight for people to tell their stories," says Precious. "There needs to be reorientation for healthcare workers. Partner with sickle cell charities and get sickle cell advocates to train and educate. There’s so much more to be done."

Growing up awareness of sickle cell was virtually non-existent, so it is a relief for Precious to see that some strides are being made to change this. She has created a social media community where she calls herself and her peers ‘sickle cell warriors,’ sharing infographics, videos, and posts educating users on the condition. 

“I’m always making sure to be active in raising awareness among my friends and family," she continues. "I create content on social media as much as possible to create as much awareness. Every opportunity that comes my way to bring awareness, I jump on it.”

Precious has hope that one day that she will be cured of sickle cell and finally be able to live pain-free. She is currently fundraising for a bone marrow transplant which could provide her with healthy cells and replace her damaged blood. Such procedures are costly and invasive, but it is the opportunity that could finally give Precious the life she dreams of. 

Meanwhile, the online community of sickle cell warriors has been a powerful source of strength and comfort for her. “Sometimes we meet in person, or we catch up via zoom to share our daily struggles, be vulnerable and encourage each other to keep going.”

“When it comes to sickle cell and sickle pain, no one else understands, except another person who also suffers from sickle cell. We use this understanding to be there for each other, and this experience truly makes us feel finally seen.”