LIVING WITH: Trials and triumphs of sickle cell warrior Ibukunoluwa Ajayi

For Ibukunoluwa Imabong-Abasi Ajayi, a determined and inspiring warrior, living with sickle cell anemia has impacted every aspect of her existence in profound ways. In this interview with TheCable Lifestyle’s Muhibat Sulaimon, Ibukunoluwa opens up about the struggles, triumphs, and what it means to live with sickle cell anemia.

TheCable Lifestyle: Aside from being a writer, communication specialist, and a woman who inspires others with her story and experience, who is Ibukunoluwa Ajayi?

Ibukunoluwa: I’m a romantic—a hopeless romantic at that. I’m a sister, daughter, and friend. I’m a girl with big dreams: the dream of having my makeup line with a top makeup brand in Nigeria or abroad, the dream of building an amazing personal brand as a content creator and having a robust community of like-minded people, and the dream of creating a legacy for my generation. I’m an all-around extrovert, but I can also be introverted. I love movies, music, and spending time with friends and family. I’m just a girl who wants to enjoy the simple things in life and live an inspiring life.

TheCable Lifestyle: Tell me a bit about your childhood and what growing up was like

Ibukunoluwa: Growing up was quite different for me because I was diagnosed with sickle cell anemia at six months old. I grew up hearing my parents discuss this with doctors. Whenever I had a crisis, the doctors would ask what my genotype was, and my mum would answer that I had sickle cell anemia. So that stuck with me. I was not allowed to do what other kids could, like playing outside, walking in the rain, or jumping around, because it would result in a crisis.

As a kid, I used to have a lot of crises. I remember a couple of times in primary school when school would be in session, but I would be admitted to the hospital. Then, when school was on vacation, I would be in school writing the exams I missed. I knew I couldn’t and shouldn’t play around like children my age because it would take a toll on me, but sometimes, I rebelled. I wanted to live like everyone else, so I would try to do things on my terms and play like other children, but I would eventually end up in the hospital. I have always liked stepping out of the line that the world and sickle cell drew for me.

My experience in secondary school was also similar. In SS2, I developed a leg ulcer, which made my teenage years a nightmare. I was about 14 or 15 at the time. I didn’t have the full teenage experience because of the wound that wasn’t healing. I had to wear bandages, I could no longer wear shoes, and I had to wear sandals because of the location where the wound was. It initially started as one wound, and then another one opened up. I had two wounds—on the left and right sides of my ankle on my right leg. It took about 10 to 12 years to heal. I battled with leg ulcers throughout secondary school, university, and even after graduation.

TheCable Lifestyle: Can you share what living as a warrior is like for you daily?

Ibukunoluwa: Living as a warrior daily is determined to take one day at a time because it comes with a lot of complications. One minute, you can be totally fine, and the next, you’re in terrible pain and getting rushed to the hospital. Living as a warrior is complicated, but it also makes you strong and makes you believe that you can overcome almost anything.

Some of the things I have overcome in my life are unbelievable. For instance, I had a leg ulcer for almost 12 years. I had three surgeries during that time, and I was just 15 when it started. I had my last major surgery in 2016, and since then, a lot has happened. So, I would say it makes you stronger than you ever imagined. Living as a warrior means working twice as hard as the people around you so that nobody sees you as weak, especially in your workplace.

It’s about living with stigmatisation and discrimination from people around you. People point and ask, “Why are you so skinny?” “Why are you wearing bandages?” “Why is your stomach bloated?” “Why are your eyes yellow? This is a result of jaundice, which is one of the symptoms of sickle cell disease. It’s about proving to yourself and others that you’re more than what the world sees you as.

Living with sickle cell is hard, especially in relationships. Partners sometimes leave the moment they hear you have sickle cell, or their parents disapprove, saying they don’t want their child to marry someone who will make them a widow or can’t give birth. These claims are untrue because I have female friends who are warriors and are married with kids.

Yes, it is hard living as a warrior, but it also makes you strong. Warriors are the strongest people I know. I have a warrior friend who just recovered from a partial stroke (and got married shortly after). He was fine one minute and had a stroke the next. It’s a crazy life because you never know what’s going to happen next. But isn’t that “life”? Whether you have sickle cell or not, you never really know what tomorrow brings. Sickle cell anemia makes you develop a thick skin because you are faced with discrimination everywhere. Personally, as a content creator and influencer, some people would say because of how vocal I am about my health challenges they don’t want their brand to be associated with it so they don’t want to work with me as much as they would with the next person who does not have health challenges or talk about the challenges.

It is not easy living with sickle cell anemia daily, but we do the best we can with what we have. It is also very expensive, especially with the current government, where everything has tripled in price. I know warriors in my community who can’t afford basic medications or hospital bills because they are so expensive. They have to choose between food and medication because of the cost. We face adversities, even from family members. I know someone whose family locks her in a room during a crisis and leaves her there. If she survives till morning, fine. If not, they don’t care. It’s crazy. That’s why I like the term warriors — we are fighters who keep rising above life’s challenges.

TheCable Lifestyle: How has being a warrior affected your physical, emotional, and mental well-being?

Ibukunoluwa: Being a warrior comes with discrimination, which affects your mental and emotional state. It also comes with physical symptoms like yellow eyes, small stature, and complications like leg ulcers, avascular necrosis (AVN), etc. Which might require multiple surgeries. Both AVN and leg ulcers may lead to a person’s limping due to the pain, and prolonged limping changes the structure of the bones in the foot, which could result in a permanent limp.

Emotionally, it’s a rollercoaster. For example, when I had leg ulcers, they would heal, and I’d think I was done with them, but they would break down again. I’ve had surgeries that failed after months, and the emotional trauma is overwhelming. It feels like carrying a baby for nine months and then having a stillbirth—all the effort and pain, only to end up back at zero. Many warriors deal with depression and suicidal thoughts because of the endless cycle of pain and trauma.

Society doesn’t help with stigmatisation and discrimination, constantly reminding you of your limitations. What gets me through is my family. My mum always says, “What if you end it all, but when you open your eyes on the other side, you are shown how your life could’ve turned out if you had persevered one more night?” That keeps me going.

I don’t want to have a life of regret, so I just persevere. I try to take every day as it comes. If I can survive today, that’s a win for me. I try not to think ahead into the future and just take it one day at a time. Currently, I have a limp on my right leg because of the leg ulcers I suffered. I developed a limp when I started avoiding pressing the leg on the ground to walk to reduce the amount of pain I was feeling. It’s a limp I was not born with, but because of sickle cell complications, I ended up with it. I also have scars all over my left thigh from all the surgeries I have had.

I’m unable to keep weight and I look smaller than I should because once I gain weight, I lose it when I have a crisis. Things like these make you not want to go out in public because you don’t want people to point them out. These things mess with the mind. Honestly, it is not easy. Sickle cell disease takes a toll on our emotional, physical, and mental well-being.

TheCable Lifestyle: What are some misconceptions people have about sickle cell anemia and warriors?

Ibukunoluwa: One of the misconceptions is that people still see us as ‘Abiku’ or ‘ogbanje.’ It’s like everyone is waiting for you to die the minute they hear you have sickle cell. The reason for this misconception is that in those days, there weren’t medical advancements to diagnose and treat the problem. Sickle cell warriors are now able to live longer and better lives as long as they have good medical care and attention.

Another one is the concept of outgrowing sickle cell. When people ask me when I’m going to outgrow sickle cell, I ask them when they are going to outgrow their AA/AS genotype. It is genetics; you don’t outgrow genetics, except when a miracle happens. I think where the misconception stems from is that the older people get, the better they are able to manage their health. So, if they don’t fall ill as much as they did when they were younger, people assume they have outgrown the illness.

I think another misconception is that people with sickle cell can’t marry or give birth, especially female warriors. This is not true. There are so many warriors who are married with kids of their own. Another is that people with sickle cell are not able to hold jobs or major positions, which is not true. We can work just like anybody else and have successful careers. See Adekunle Gold, he has a successful music career despite being a sickle-cell warrior.

The fact that we are weak and lazy is another misconception. As I have said multiple times in this interview, sickle cell warriors are some of the strongest people I know. It takes a lot of mental, physical, and emotional strength to go through everything that we do. Yes, we have our days where we can’t get out of bed or we need to be hospitalized. We break down because we are anaemic, and the minute we start to feel better, we are back up on our feet and grinding like everyone else.

I have some warriors in my community who say doctors told their parents that they shouldn’t send them to school because they can’t handle it, but marry them off quickly so they don’t lose on both sides, which is ridiculous. We still have people who think sickle cell warriors should not go to school, which is untrue. I went to school, graduated, and did my master’s, and if I have the opportunity to further my education, I will. So, there is nothing we can’t do if we put our minds to it.

TheCable Lifestyle: What support systems (family, friends, medical professionals) have been most helpful in managing sickle cell anemia?

Ibukunoluwa: My family has been my major support system. Family can make or break a warrior. If your family is extremely supportive, takes every crisis seriously, pays attention to you, understands your triggers, and can tell when you’re struggling even when you don’t say anything, it makes your journey with sickle cell easier. Sometimes, because of not wanting to feel like a burden on people, we tend to keep quiet about lots of things we are going through, but if you have a family that supports you, it helps. So, family is very important.

Another thing that has helped me is my community. I have a community of warriors, and having people who can relate to what I’m going through is very important. Having people who understand me, see things from my point of view, have similar experiences, and can encourage me with their experiences is priceless.

In my experience in Nigeria, there aren’t that many medical professionals who are on your side or try to understand what you’re going through. I have had personal experiences when I go to hospitals, and they are like, “she has come again.” These are statements you don’t expect from medical professionals because they are people who are supposed to know better. But you go to the hospital, and they are treating you like you enjoy the multiple visits to the hospital. Or maybe you are in a lot of pain, and because they don’t understand the severity of it, they start acting like you are some kind of drug addict and just want to be on pain medications all the time. This is not true because those pain medications are injected. Nobody wants to be poked every time like a voodoo doll because sometimes that is how it feels. For example, you’re on admission; they set a fluid line today, it breaks down, and they have to set another and another. Sometimes, they have to inject you with painkillers, especially when they cannot find a vein to set another cannula, and you end up with so many scars and blisters. You just feel like a voodoo doll. Nobody wants to experience that.

There are a few medical professionals who have been kind to me, like a doctor, Dr. Ezeh, who treated my leg ulcer at the National Orthopedic Hospital in Igbobi; Dr. Bailey, who I met in the US; Dr Ademola, a hematologist I used to see; and a couple of nurses at the current hospital I use. It is tricky when it comes to medical professionals, but I really wish they would see things from our perspective and understand that we don’t enjoy being ill. Sometimes, it feels like they are tired of attending to you.

I have a warrior who told me she had a blood transfusion and expected to feel better, but she didn’t. She went back to the hospital, and they said there was nothing more they could do and that she should go and look for a sickle cell clinic where they could understand her better. Instead of that, they could have referred her to a hematologist who handles sickle cell cases to examine her. My support system has been my family and my community. They have been really great.

TheCable Lifestyle: How do you manage the crises and other complications that come with being a warrior?

Ibukunoluwa: The older you get, the more you can tell when a crisis is coming. You can feel a crisis coming when you have been extremely stressed, the weather changes, or you experience a loss. Usually, if it is not severe, I take time to slow things down, watch movies, and lodge in a calm hotel if I have money to chill. However, if it is severe, I take myself to the hospital, but if it is too much for me to handle, my sister or mum goes with me. If it is serious, I get admitted to the hospital. If not, they just place me on a watch.

I remember there was a time I went to an event, and I could feel the crisis coming. So, I went to the hospital to get checked out, and I was told my oxygen level was really low. I had to be placed on observation and oxygen, and then my sister and mum had to come. It is easier to manage when it has been felt so it doesn’t come in unaware. So, I quickly took myself to the hospital, slowed down, ate better, and drank a lot of water. Regularly, I just try to avoid stress, relax, take my routine drugs as I should, and try to keep myself happy. That’s how I manage myself.

I also go to the hospital and meet my hematologist once every two to three months to check how I am doing and my blood level and see if there is anything that needs to be tweaked with my medications. It helps because they can tell when something is wrong. I just try as much as possible to be happy.

TheCable Lifestyle: Are there any treatments or practices that have made a significant difference for you?

Ibukunoluwa: The only medication that made a significant difference for me when I was younger was a supplement called ‘Ciklavit.’ While taking this, I didn’t have any major crisis for about four years, but then the market suddenly got saturated with a lot of fakes, so I had to stop taking it. For some others, ‘hydroxyurea’ has worked wonders, but I had a severe reaction to it. Other treatments available are quite pricey. There are medications that cost over $16,000 for 30 pills, and they aren’t readily available in Nigeria. What I would say has worked for me is drinking a lot of water to help blood flow. I take my folic acid as often as I should. Also, when things get overwhelming, I take a break and distract myself.

TheCable Lifestyle: What has been your biggest source of strength or motivation as a warrior?

Ibukunoluwa: First, I would say God. God has been my strength because there are a lot of things I had thought I would never be able to do, but God has made them possible to do. I do a lot of things afraid, but I do them because I know God has my back.

Another major source of strength is my family. My mum supports me as much as she can. My father, sister, and aunt are so supportive of me. They show up for me when I need them, and I’m thankful to have them because they give me strength. Other warriors are also my source of strength. Whenever I create content relating to sickle cell anemia, do an interview, put out videos, or campaign, and I get positive responses from them, I get strengthened. It means that what I’m doing is helping people and making a difference.

TheCable Lifestyle: If you could encourage someone newly diagnosed with sickle cell or a parent with a warrior, what would you tell them?

Ibukunoluwa: The first thing I would say is, “Sickle cell is not a death sentence.” The next step is to find a hospital that has a hematologist, register with an HMO, and start to study your body and your triggers.

Take your routine medications daily and drink a lot of water. You also need to start avoiding stress and those triggers you have noticed. Find a community of warriors. I have one on WhatsApp; the link is in my social media bios. In a community, you would be able to learn and relate to people; it also reminds you that you are not alone. Do not be ashamed; no one gets to choose their genotype, and having sickle cell is no fault of yours, so there is nothing to be ashamed of. Be proud of who you are.

TheCable Lifestyle: What changes would you like to see in healthcare or society to better support people with sickle cell anemia?

Ibukunoluwa: In healthcare, I would say we require specialist hospitals that are dedicated to sickle cell treatment. A hospital where the professionals have been trained on how to care for warriors, they understand the psychology, emotions, and complications that come with sickle cell. Also, having some form of financial assistance from the government in terms of health insurance subsidies, e.g., not having to pay 100% of your bill. If a percentage of the burden is taken off, it will be great.

Hospitals should invite professionals to train their staff on how to care for and talk to sickle cell warriors because we interact with medical staff a lot more than the average person. For society at large, people should just be kind, learn to mind their business, and avoid commenting on everything they see about someone’s appearance because they don’t understand what the person is going through. People should be kinder with their words.

Raising awareness about sickle cell should not be left to warriors and family and friends of warriors. The whole society needs to get involved, especially in Nigeria. Nigeria has the highest number of babies being born with sickle cell anemia every year, and if it continues, it will become a pandemic that will have adverse effects. Awareness needs to be taken seriously, taken to the grassroots, and communicated in all local languages.

The government is also not paying enough attention to it. They need to sit up and get to work. People need to understand the extent to which sickle cell has a major impact on people’s lives. We also need policies that help make the lives of sickle cell warriors easier. Sickle cell disease is an invisible disability, and as such, there should be policies that protect sickle cell warriors in the workplace and in society.

There are intending couples with the AS genotypes who are not going for genetic counselling and are depending on love or miracles. It is unfair to intentionally bring a child into the world to go through all of the insanity that comes with sickle cell anemia.