‘It Affects Everything’: The Harsh Realities Of Living With Sickle Cell Anemia

For Hikmat'llah Oni, living with sickle cell anaemia as a Nigerian means navigating chronic pain, medical dismissal, and the lack of accommodations that come with dealing with a rare disease. 

Even before Hikmat’llah Oni could hold ‘sickle cell anaemia’ on her tongue, she had been dealing with the consequences of living with that condition. And it wasn’t until she was in primary school that she learnt the name of the thing that had been plaguing her all her life. 

“We were watching the news and there was a documentary playing where a young girl was rolling in pain. I asked what was happening and I was told in passing that I also had that condition,” said the 28-year-old. 

Before then, Hikmat’llah was told by her parents that she had always been a very sick child. Looking back, it felt like her parents were telling her what she needed to know at that age. 

For many years during her childhood, she would battle numerous crises and sometimes she would do that alone because she didn’t understand that it was not normal for people to feel such pain. Sometimes, when it got too much, she thought it was her fault she was feeling that much pain and in moments she spoke up, she would be given over-the-counter medications that didn’t do much to help. 

Sickle cell disease is a hereditary red blood cell disorder that affects the delivery of oxygen to body tissues and makes the carrier more vulnerable to infections.

According to a recent study, the mortality rate for sickle cell anaemia is 36.4 per cent for children under 5 years, 15.3 per cent for infants, and 43.3 per cent for children under 10, with the risk increasing with age. 

Out of the 20 to 25 million people affected by sickle cell anaemia worldwide, 12 to 15 million are in Africa. While developed countries account for only 10 per cent of the cases, Sub-Saharan Africa accounts for 75 per cent. Nigeria is said to have the highest number of cases in the region, with 2 to 3 per cent of the population affected. 

Medical dismissal 

Hikmat’llah Oni has not had a good experience accessing healthcare in Nigeria and says the only time she was treated with respect and decency was when she was in the United Kingdom for her Law programme.

“The doctor I was seeing in the UK was capable of pain and physical treatment. But it was different in Nigeria, where there wasn’t much done in emotional or mental care. You would think I wasn’t paying for the treatment.”

“When it comes to sickle cell, many doctors are biased about the pain and medication they give. They give their own opinions and don’t really care about your needs as the patient. They don’t understand when you are in unbearable pain,” she explained.

Sometimes, she feels dismissed as a human when seeking treatment. This leads to her holding back from sharing.

Jimoh Oluwatoyin Raheemat, who is researching sickle cell anaemia at Afe Babalola University, confirmed that sickle cell patients are usually stigmatised in ways that end up affecting their mental health. 

“Health professionals, including nurses and doctors, usually focus on the medical condition and don’t give holistic care. They usually feel like patients are exaggerating their pain,” she said. 

Growing up with a father with sickle cell also made Jimoh understand that people around sickle cell patients can easily get frustrated and even sometimes transfer aggression, making it harder for patients to express themselves. 

Even though everyone can experience medical gaslighting, bias and dismissal, studies have shown that women are more likely to experience them. 

“One time, a doctor told me to my face that he felt sorry for me since people with my condition don’t live long. One said I was addicted to medication just because I was still in pain. And that triggers my mental health. People don’t understand that sickle cells affect everything; I feel everything can be a trigger. Being too sad, emotional, drained or tired can lead to a crisis,” said Hikmat’llah.

It’s easier to prevent crisis when you are in a better mental state, the weather isn’t too cold, and you eat healthy, but stress can make things worse, she told HumAngle. 

“I have made the decision to stop going to hospitals unless I faint and my parents take me. Sometimes, I will go with a lot of pain and they will only give me diclofenac or paracetamol injections and dismiss my complaint. It is more emotionally and physically comfortable and less stress-free to treat it at home as well. I know stress is a trigger for me and sometimes hospitals make me feel worse.” 

She said the last time she had a crisis, she invited a nurse to her house to administer the necessary treatments, and it was so much better than her previous experience at the hospital. 

“Due to the rate of drug abuse in the country, it’s harder to get the strong pain medications you need and I understand that. If you ask for them at hospitals, they treat you like a druggie.”  

A 2020 survey by Nigeria’s National Bureau of Statistics and the Centre for Research and Information on Substance Abuse released estimated that 14.4 per cent of Nigerians, which is estimated to be 14.3 million people, had abused drugs in the previous year, with the majority of drugs abused being pharmaceutical opioids such as morphine, tramadol and codeine. 

The woman wearing a black hijab has sickle cell anemia.
Hikmat’llah Oni

Navigating the corporate world

Hikmat’llah used to have a cake and pastry business, which, though flexible, really stressed her. “It doesn’t help that I get tired easily and can’t stand for long. I came to learn physical labour isn’t good for people like me,” she said.

Sometimes, after an order, she would feel incapacitated for two days. She had to come to terms with the fact that physically intensive activities are not good for her even though baking makes her happy.

“The flipside of working in corporate is that whole capitalist thing that nobody cares, even when they know your condition, they still sometimes blame you. They see it as making excuses and I have to work harder in order to make up for future and past absences. With my chronic illness, I also struggle to make plans in advance.” 

Hikmat’llah was constantly anxious at the law firm she worked at. She tried to mitigate it by working with others so that they could handle things in her absence. It didn’t help that the work environment was toxic and stressful. 

She explained her condition to the firm after joining, but she had to deal with people thinking less of her. Sometimes, even when she couldn’t make it to the office, she made sure to do work at home, but it still didn’t feel enough. “It felt like being between a rock and hard place. Sometimes people can see it as you getting special treatment.” 

Sometimes, even when she felt the onset of a crisis, she tried to hold on for as long as she could. She would take a hot water bottle with her to work so she could use the hot compress on her body and sometimes, would call her mother to put hot water for her so she could soak her legs as soon as she got home from work because of the toll it was taking on her. She constantly had to take medications for her pain.

Sometimes, she would find herself leaving the office at 7 p.m. so that she could catch up on work while her colleagues got to close earlier. 

According to Jimoh, living with the condition can constitute a great financial burden on the patients and their families.

“The cost of medications, blood transfusions, oxygen therapy, and hospital admissions without insurance is really overwhelming. The financial burden doesn’t only affect their ability to access healthcare but also adds stress and anxiety to their lives. Unemployment due to stigma is also directly included in the financial impact.”

Social implications 

Hikmat’llah says sickle cell anaemia has affected every aspect of her life, including her religion. For instance, when she was younger, she would force herself to fast consecutively during Ramadan even when it would trigger her condition.

“No one told me it was okay to miss fasting or to sit down and pray. When I started sitting down to pray, people would look down on me and that impacted me negatively. The religious guilt a person with chronic illness deals with is heavy.” 

She has come to learn that it’s okay to take breaks when she needs them without shame and that made it easier to cope with the guilt of not performing like everyone else. 

One of the things that bothers her about living with a chronic illness is how sometimes people would treat her like a handicap or micromanage her. Other times, there is little to no empathy from people around her. 

“People don’t understand that we are not just taking breaks to miss things but rather taking breaks to survive.” 

People usually have biases on what sickle cell should look like. As a result, her trying to be jovial can make them dismiss the amount of pain she is in or even assume she is lying when she tells them.

“I am more on the big side, so people would not believe me when I tell them I have sickle cell. And sometimes, they would start telling me gory details like how they had a friend who died from the condition and I don’t want to hear that.” 

Hikmat’llah believes that there should be more efforts to create awareness of sickle cell and other chronic health conditions. She wished her parents sat her down and told her about her condition when she was younger. Even though they paid attention to things like what she ate, drank and did, she didn’t have any idea, which made her dismiss her own pain for a long time. 

“I didn’t get to make informed decisions. No one really sat me down to teach me anything about puberty, sex, having children, social lives, genotypes and other things.”  The only information she got on genotypes was not to marry someone who wasn’t an AA type. She wants women dealing with sickle cell to know that there is more to life and relationships than just finding someone who is AA and there are other things they should look out for. 

“I also believe there should be more therapy targeted at sickle cell patients; we deal with mental health issues a lot.  The mortality rate of the condition and other things can really mess you up.” 

Hikmat’llah wishes for a world where people are more aware and inclusive, with better empathy and support systems. 

“The saddest thing for me is having my mum abandoning her life to stay with me overnight, and I don’t want to see anyone else get through that. I believe it’s selfish to be with someone with an incompatible genotype unless you do not intend to have kids. My parents didn’t know but later found out there was a mix-up when they ran the test. I know they feel guilty, but I understand it’s not their fault.” 

She is no longer looking for an office job unless she finds an inclusive and understanding environment. 

“Since leaving the office, I have been in a better place mentally. Money isn’t worth some things. People really can’t feel the pain you are going through. You just have to pick yourself up.”

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