INTERVIEW: 'It's Like a Hot Iron Being Dropped Over Your Bones Repeatedly' - A Sickle Cell Warrior Explains a Crisis

What is a sickle cell disease? It is a lifelong illness and blood disorder that affects haemoglobin: the protein that carries oxygen through the body. The red blood cells are usually disc-shaped and flexible enough to move easily through the blood vessels. However, due to a genetic mutation in sickle cell disease, the red blood cells become sickle-shaped, thus leading to an obstruction in blood flow. Symptoms include severe pain crises, anaemia, fatigue, swelling in hands and feet, frequent infections and delayed growth in children. In this interview with ABIMBOLA ABATTA, Oluwatobiloba Adesote, a sickle cell warrior and medical student, shares her experience.

Can you walk me through your journey with sickle cell disease?

My journey with sickle cell actually started when I was 18 years old. It's not as if I was not diagnosed early or that I was not aware of my health status at the beginning, but I started experiencing the pain, crises and struggles that come with sickle cell at this age. This was also when I gained admission to school. Prior to that time, my parents helped me manage it, so I did not really experience any struggles. I ate good food, used my drugs and lived like a normal child. The only thing was that I was using my drugs.

However, when I gained admission, I was not being careful with my health. You know, there was no mom or dad with me in school. I was not entirely careless about my health, but the stress of school and not keeping up with the use of drugs. It cannot be compared with how it was managed at home. All of this affected me and led to my first-ever crisis.

What does the pain feel like physically and emotionally?

To me, the pain is just like a hot iron being dropped over your bones continually and repeatedly. It is a sharp pain. And it's very painful because this pain comes from the bone. Sometimes, it might affect just the hands. Sometimes it affects both hands together with the legs. The chest and back, too. Wherever you have bones in your body, the pain is there. And sometimes, you feel the pain in multiple places at once.

Sometimes, it is mild. Other times, it is severe. If it is very mild, one can use drugs to treat it, but if it is severe, one has to go to the hospital for injection and even drips at times. If the pain is very mild and you don't treat it on time with drugs, it will turn into a severe pain crisis. The earlier you pay attention to your pain, the better you can manage it, because it worsens if nothing is done.

Emotionally, the pain can drain you. It can drain the inner strength out of you. Sometimes, you will have the physical strength to do some things, but you feel overwhelmed, you lack the inspiration to do some things. Also, it can make you have aggression toward your loved ones, those who care about you.

How has it shaped my life? Thank God I am now in my fifth year in school. I have gained some hard strength from sickle cell illness. It has taught me to be more careful about my health and to pay attention to myself. It has also taught me to balance my academic and social life and everything I am involved in, how to do one thing at a time and not rush into activities at a time. It has also taught me to take things easy because, in the end, one's goals will still be achieved.
A pictorial description of sickle cell disease. Credit: Cleveland Clinic
Are there any signs that indicate the start of a pain crisis? How do you prepare for these moments?

Rain, cold, and stress can trigger crises for me. For instance, if I expose myself to cold or rain, I try to take preventive measures like rubbing my body with balm and sometimes taking pain relief even before the actual pain starts. If the trigger is stress, I try to get enough rest. However, sometimes these measures don't work, and I end up with pain crises. The truth is, I don't think there is anything that can truly manage it. If a crisis wants to come, there is really nothing you can do about it. Sometimes, the preventive measures work. And other times, they don't.

Any aspects of your daily life that you believe people without sickle cell disease might not fully understand?

Sometimes, people think the expression we give to the pain we experience is too much, that maybe the pain is not up to how we are expressing it. I think this is the area people don't really understand. Even the nurses sometimes don't understand. They feel like we are doing too much. Maybe because they haven't experienced the pain themselves. It's not like we are trying to do too much or trying to do all of that to get pity. We are only expressing the pain because it is really there and it is too much.

What are some of the biggest challenges you face on a daily or regular basis because of the illness?

One of the challenges would be having to carry drugs around. I have to use the drugs on a daily basis; it's a daily routine thing. I use some in the morning, afternoon and night. Having to carry them around and also using them in public, like the lecture room, are some of the challenges. People get to see that you are using drugs almost all the time. Another challenge is that when the pain starts, I won't be able to do anything. I will just be on the bed. Also, sometimes, when you complain of being weak or stressed, people are asking why you get stressed easily. They see you as a weakling. Those are the challenges.

In what ways has it affected your mental and emotional health?

I won't really say it has affected my mental or emotional well-being. This is because I love to be positive. I don't like seeing myself according to my circumstances or challenges. However, I remember that I broke down at a point, but I recovered quickly. At that time, I had to repeat a whole academic year because I could not write my examinations, and there was no way I could have been promoted without exams. In my department, we don't do carryovers. As a medical student, you must repeat the whole year if you miss or fail an examination. I broke down at that point, but it did not take me too long to recover.

Also, when I am feeling pain, I sometimes pass on aggression to people around me. But naturally, I don't allow anything to ruin my mental health and emotions.

How do you manage to stay positive?

My faith and belief in God keep me going. I believe that it won't be like this forever. I believe in God's divine healing, and I believe in total victory. This is what I use to encourage myself. I am much better now, and I am trusting God for total victory.

Has anyone ever misunderstood or stigmatised you because of this illness? How did you handle the situation?

In my first year, I had a tutor who taught me physics and chemistry. He organised a night tutorial at some point, but I could not go because I was not supposed to expose my body to cold. It was even during the harmattan season, but nights are usually colder than the day. Actually, he was not aware of my health status because I did not tell him. When I saw that it had gotten to a point where he was calling and questioning me, thinking I was not intentional or perhaps was lazy about my academics, I had to explain my situation to him, and he understood.

Apart from support from family, have you ever been a beneficiary of any community support?

I have benefited from community support in various forms. For instance, I enjoy the privilege of staying in the school accommodation to make life easier for me as a student. Another reason the school gave us the accommodation is so that we can access the health centre on time due to its closeness. I also remember that at one time, they were sharing water bottles because water is one crucial thing for a sickle cell warrior to flush out the toxins in the body system. I remember that I got a very big water bottle on that day. My friends, too, have been supportive. On some days I have pain crises, and I can barely walk; they will help me to the health centre and help me to get my case file and some other things. If I am admitted to the hospital, they keep me company and get me food.

How would you describe access to treatment and response from health workers? Also, medication as well.

I think primary health centres are very easy to access for treatment, but when it comes to tertiary health centres, that is when it is very hard because some cases require referral to a tertiary hospital. I remember when I was referred to a tertiary health centre in my first year. Gaining access to the place was not easy, even though there was supposed to be something like preferential treatment then based on the referral.

The primary health centre in my school is actually easy to access. When the case is beyond the capacity of the school health centre and you have to be transferred to a general hospital, that's where the issue lies. I remember a time too when my dad had to start calling people he knew, his connections, so that I could be attended to when I was referred to another hospital.

About the cost of treatment, as a student, I enjoy the privilege of not paying for drugs or medical bills at the school health centre. Whenever I am referred to the general health centre, I enjoy the National Health Insurance Scheme (NHIS) and only get to pay 10 percent of the total cost of treatment. For other drugs that I have been using from home, my parents get them for me.

On the response from health workers, I think it largely depends on the personality of whoever is attending to me. Some are nice, while others are not. But the majority of those I encountered were very nice to me.