At 19, Misturah Abisola Owolabi was full of life. Like any other diligent 300-level university student, she was preparing for her exams, looking forward to her final year at the University of Lagos, while aiming for a first-class degree.
However, her life took an unexpected turn when her health began to decline. She experienced a range of troubling symptoms, including hair loss, chronic fatigue, body pain, and swollen eyes and face.
After undergoing numerous tests and treatments, she received a diagnosis that was unfamiliar to her and her family: Lupus.
The Lagos State Teaching Hospital in Ikeja soon became her second home, and taking various medications became a daily routine. She felt hopeless, facing a disease with no cure, only manageable through ongoing treatments.
One day, an encounter with a nine-year-old boy in her ward, who was also suffering from Lupus, changed her perspective. Despite being bedridden and experiencing more severe symptoms, he optimistically talked about his future plans. This interaction rekindled her hope and faith.
Eight years later, Owolabi, 27, has a thriving career in the media and marketing sector, owns a modelling agency, and works as a fashion stylist. In an interview with The Record’s Omon Okhuevbie, the Lupus warrior shared her journey of living with the illness and how she manages it in the bustling Lagos community, while also raising awareness about the disease on social media.
This interview has been edited for clarity and brevity.
OO: Can you share a bit about your journey with Lupus and how it has impacted your life?
MO: I got diagnosed with Lupus eight years ago. That was in April 2016 and it has been a very interesting journey. I was diagnosed when I was 19 and, at the time, that was the first time I had heard about the illness. So, it was a shock to me. I was a 300-level student who was planning towards final exams and I just got diagnosed. I had to stay away from school for a while.
When it comes to diagnosis, it wasn’t like a straightforward journey. I am thankful that it only took a couple of months because it usually takes longer. Those months were a hectic time for me. I remember how it started, with me waking up in the morning and my eyes were swollen. There was really no explanation for that. The first reaction was ‘oh maybe I was reacting to something that I ate or something that I did’. My parents took me to the hospital. They were treating me for allergic reactions. I would take the medications and then they wouldn’t work or it would go down for a few days and come back again. It escalated to me having sores all over my body. I started coughing and I would see blood in my cough. I was getting so weak, I was losing weight and prior to that time I was really skinny. I was losing even more weight, I couldn’t eat and I found it hard to stand on my own. My body was always aching, in serious pain. Even when I ate, I lost my sense of taste.
We got to a point where we realised that going to hospitals back and forth wasn’t going to work. I had to open up to one of my friends and her mum was a senior nurse at the Lagos State University Teaching Hospital in Ikeja. We went there and it was treated as an emergency because they admitted me on the spot. All types of treatments were administered. We were doing so many tests. My body was swollen at this point, my arms, my face and at some point, my two eyes were closed because it was so swollen that my eyelids covered themselves and I couldn’t see.
They were doing tests to check if it was the kidney. It was just throwing up a lot of different symptoms. You know sores on my body, weakness, joint pain, blood in my urine, blood while coughing, I even had sores inside my throat, at the back of my feet. Different weird things were just happening. I also felt like my lungs were not working, I would be choking on my breath. That’s the thing with Lupus, it imitates a lot of illnesses. So, as they are treating one symptom now, they are also treating the other.
The one that really got me worried was one day I woke up in the hospital, and my hair had fallen off the bed. I had didi (cornrows) done and by the time I woke up, it felt like my hair was tissue and it had already fallen off on the pillow. That was when I knew that this was getting serious.
It felt like that was one thing that the doctors used to be able to determine what was wrong. They brought in a rheumatologist and then they diagnosed Lupus. I can remember when they were telling me oh you have Lupus and I was like okay, what is this about? They told me it is an autoimmune autoimmune disease where your immune system is fighting your body and it felt weird. In Biology, we were taught that the immune system is supposed to protect your body. So, why is this one fighting me? Is it like a civil war happening in my body? And the doctors were like yeah, your immune system is overactive or they are confused. They can’t differentiate between healthy cells and infections or diseases that they are supposed to protect you from, so they are attacking everything inside.
It took me like a week to process it and I was just blank, I felt so emotionless. My mom was already hysterical because we had never heard about this.Then there was no explanation about what caused it and there was no cure, that was when it really dawned on me. I was somebody that I hated medication before that time; imagine being told that I had to start taking medications. I was swallowing up to like 20 pills. The worst part is the side effects of the drugs; and steroids started coming up, my body was fighting the medications too. Then, I started gaining weight; that was an interesting part because I was really sick.
Luckily, my doctors were very clear; they explained every bit of it. They were so accessible that I was able to call them and text them because I had a lot of doubts. Every day I would wake up with different symptoms and I would be like what’s happening again? I thought I was getting better. They would tell me ‘oh it is the side effects of this medicine, so take this medicine to counter the side effects of that side effect.’ So, it was really a lot for me at that point but I am grateful that I had doctors who were nice, clear, open and accessible for me to get the help that I needed.
OO: What are some of the biggest challenges you’ve faced while navigating life with Lupus in Lagos?
MO: One thing is Lagos is hard for everybody but when you now have a chronic illness that limits how you perform, the kind of actions that you take, even the food that you eat and how you are even able to go about your daily activities, it becomes even harder.
I think one of the challenges that I face would be the fact that a lot of people don’t understand what you are going through. So, you don’t necessarily expect empathy, it’s everybody treating you the same way. You could be on your way to the hospital, trying to enter a bus and you look like you are about to faint and nobody is even looking at you because they don’t really send you like that. There’s that part because there is really no awareness, especially when you have a disease that doesn’t really show on your face.
Also, the best places where we can get healthcare are usually government-owned hospitals. It can be a challenge actually assessing those things even though that is where you get the best doctors.
For example, when you have appointments, you know that you have to get your appointment early no matter how sick you are, so you get a chance of seeing your doctor early. And there is traffic and even work because Lupus is expensive. For someone like me who got diagnosed as a student, my parents supported me till I started working. When I started working, it became a bit more challenging because you are working to afford to pay for medication but also you can’t afford to work too hard because if you work too hard you might push your body into a flare.
Then you still have to navigate going to work in Lagos, coming back from work and even trying to have a social life. Everything is fast tracked in Lagos. You have to be ready to show up every day regardless of how you’re feeling and it’s not all employers that actually understand and it’s also not something you can blame them for. You live in a state where people are trying to make ends meet and it is almost like if you slow down you’re on your own.
So, you have to learn to push yourself; even when you’re not feeling at your best, you have to be on top of your game always.
OO: Are there other support systems and communities you have found helpful for Lupus Warriors in Lagos?
MO: Yes, there are actually a lot. A lot of Lupus patients are really creating groups, safe spaces and support communities for us. When I was first diagnosed, I joined Laba Laba Foundation which was created by a Lupus patient. She is elderly, she has had Lupus for over 30 years. I also joined another one, the LUREG foundation as well.
What we do is we have a group chat where people share things. You know we support one another, we share experiences. If you’re going through anything, you can drop a message. We also organise events where we create awareness for Lupus. There are times when medications become overly expensive. So, these support groups speak to other pharmacies around Nigeria to help us bring those medications to Lagos at cheaper prices. Even people that cannot afford their medications, we crowdfund for them. We have a really good support system especially in Lagos, compared to other states. There are so many Lupus patients from other states that come into Lagos to see the rheumatologists because we have like the best rheumatologists in Nigeria, I can say that confidently.
OO: How do you cope with the physical and emotional toll of the disease on a daily basis especially living in a city like Lagos?
MO: One thing I have come to learn how to do is to listen to my body. I know when and how not to stress my body. So, physically when you have Lupus, joint pains are like a constant part of your every day. On a scale of 1 to 10, maybe five is a normal good day for you. Some days are up to like nine over 10, in terms of the kind of pain that you’re feeling.
So what I’ve learned to do is, I take a lot of rest. I have cut down on social life, I don’t keep late nights, I don’t do overnight parties because I know that my body cannot accommodate that in any way.
When it comes to the mental part, to be honest Lupus is a very depressing situation. I am not going to pretend as if I have got it under control because I haven’t. I still stay up all night and cry; in the mornings I cry, why is this happening to me?
Another thing is I treat Lupus as the illness that it is. When I’m feeling a bit emotionally down, I speak to my doctors. I’m currently seeing a psychiatrist in LUTH as well. Lupus also has some neuropsychological complications that give you depression, anxiety and things like that.
Personally, when I start to feel symptoms of things like that, I don’t assume that it’s just me being stressed. I feel like it’s something related to Lupus and I treat it as such. I speak to my doctors and then they prescribe something that would help me or if they see that this is not really something caused by Lupus, they prescribe other solutions.
I also watch what I eat because they play a really significant role. We have a disease that causes our immune system to actively attack our body, so you don’t want to take something that will be boosting your immune system overly because you already have an active immune system.
OO: Could you discuss any misconceptions surrounding Lupus that you’ve encountered, particularly in Lagos?
MO: The misconception first is that Lupus is not ordinary, it is not medical, it is spiritual because even in the way that this disease occurs, it doesn’t sound natural if we are being honest. Especially when they now tell you they don’t know what is causing it and there is no cure. So, it feels like something that needs to be tackled spiritually but that is a really bad misconception. When you start to go through the spiritual route, you neglect some of the things that you’re supposed to be doing medically in terms of your treatments and the lifestyle changes you should be making.
There are people who believe that you need to have faith in God, you need to stop taking your medication and that is when God will use his power to cure you. Personally, I believe that the fact that the medications you take work for you, that is enough of a miracle. So, going out to seek all other forms of miracles is going to be detrimental to your health.
OO: Are they stigmas attached to living with Lupus?
MO: When it comes to Lupus, for many of us, it might not physically show on our faces but then there’s really no way that you’ll be falling sick so often that people around you will not notice. So that stigma comes from the fact that people tend to see you as the person that is always sick. Among your friends, the things that they would even expect from you will be different. Soon you realise that you have become more isolated because nobody is inviting you to hang out anymore. Nobody is inviting you for an event because they don’t want somebody that will come and fall sick in the middle of a party. There is also the physical stigma especially when you start to exhibit some symptoms on the skin. I remember when I was first diagnosed, I had rashes all over my skin. I had rashes that were breaking out in sores on my chest, on my thighs and stuff like that. In cases like that, even me I could not go out because I saw the way even people around you are looking at me. When things appear in your skin, people don’t want to come close to you except loved ones. Everybody feels like don’t let me touch them, let them not transfer whatever it is to me. They don’t understand that you cannot physically contract Lupus from someone.
Another stigma is being seen as a liability. Even the loved ones that are there to take care of you, people start to look at them and be like they’re going through a lot for even sticking with you. What it means is that they are dedicating their life to being caregivers for you. A lot of Lupus patients have lost their lovers after they were diagnosed. Many people cannot cope with the fact that they have to deal with somebody who is always sick. They are people who even have more serious complications like kidney problems, bone problems or heart problems. So all of these things people will stigmatise because you have become that liability or that consistently sick person and nobody wants to be associated with.
So that stigma from relationships, friendships and even the workplace. A lot of Lupus patients are not able to get jobs because employers are constantly saying I want to make money and I want an employee that will be there every day. Once they hear you have Lupus at the interview stage, they cannot proceed with you. That is one of the things that make it harder for Lupus patients to come out to say I have Lupus.
OO: Can you share any memorable experiences or moments that have shaped your perspective on living with Lupus?
MO: One experience that has really shaped how I have perceived living with Lupus was an experience I had in 2019. My symptoms were flaring up and I was in the hospital. I was supposed to take injections for three days, so I was going and coming to take the injections. While I was there, somebody else was next to me, like the bed next to me and it was a nine-year-old boy. He passed, may his soul rest in peace, but at that time he was sick as well.
He was in the hospital permanently, while I was still going and coming. During that period, his mum would come and would be speaking to him and he was really going through a lot at that point, he had heart issues, leg problems and issues with his lungs. I was a bit friendly with his mom, so she used to share some of the things with me. When his mum would come around, I would hear him say things like what he wants to do next week when he leaves the hospital and even though his mom knew that he wasn’t really leaving the hospital soon. The boy was always excited. He was always talking about the plans that he had the next day or the day after that, almost like he had a lot to look forward to.
At the time, my own symptoms were not as serious as his own because he was basically bedridden but I was still able to go and come back. So, in that moment, it just made me think of the fact that there were so many things I was taking for granted. Just looking at how a 9-year-old was always optimistic and he was so confident that he was going to still go back to school and do something, even planning football games or parties that he would have with his friends. He was even looking forward to his next birthday but, me, anytime I had any flare, I would just give up, wallowing in self-pity and doubts. It just gave me that fresh perspective to the fact that your mind is literally everything and if you condition yourself to think that there’s no hope for you and you stop looking forward to exciting days, you really might not get those better days; and even though he passed away, I learnt a valuable life lesson from that experience.
OO: Can you share any unique challenges you’ve encountered in accessing healthcare or support services for Lupus within the Lagos community?
MO: I will start by saying that Lupus is very expensive. Our medications are a lot and many of them cost a lot, especially with the fact that they are often affected by the dollar rates because they’re imported. There is no way that you can manage this condition, if there’s no money to afford the treatments, the medications, the tests that you need.
There was a time in 2020 where one of our medications, HCQ, was allegedly prescribed as a medication that can help against COVID-19 and it became so expensive all around the world. It was not accessible, pharmacies were hoarding it, Lupus patients couldn’t have access to it. And that was a really tough time because medications that we’re buying for like N7000 per pack was as high as N60,000.
Another one will be the shortage of rheumatologists. I don’t think we have up to 200 rheumatologists in Nigeria and even in Lagos, I don’t think we have up to 100. That is why many Lupus patients use LUTH and LASUTH because that’s where a lot of rheumatologists are. They are the doctors that can treat Lupus, they understand the medical condition. Imagine we have a 100,000 Lupus patients in Lagos with only a few doctors to attend to them. To get access to healthcare, you have to wait in a queue for hours to see a doctor.
OO: In what ways do you think the healthcare system in Lagos can be improved to better support individuals with Lupus?
MO: I think one thing that I usually pray for everyday and I added to my prayer point is that many more doctors should train to be a rheumatologist. There is a really limited number of rheumatologist in Lagos. If we can have a higher number, I believe that we’ve actually ticked one of the boxes in making sure that Lupus patients have access to healthcare.
Another thing is we are hoping that one day there will be a fund for Lupus patients who do not really have enough money to buy medications or even free medications at best. The Lupus community in Lagos are always crowdfunding for people but there’s really not so much that we can do. So we hope there can be something within hospitals where you will get discounts in your treatment, all the tests that we do.
There are some test centres in Lagos actually that have been really helpful because some of our doctors have relationships with some labs where when you go there and your prescription for some test is from a doctor from LUTH or LASUTH, they will give you a discount off your test. If we have more things like that, that would be really great.
Also, if we can get donations within the healthcare system, people who are willing to donate to Lupus patients that are trying to get kidney transplants or even trying to just get through everyday life, that would be really amazing.
OO: What advice would you give to Lupus patients in Lagos and other states in Nigeria who have just been diagnosed with it?
MO: One thing I can say confidently everywhere is that the medications work and I am proof of that. Please do not joke with your medications, although they can be a lot andthe side effects can be really annoying. I’ve been doing it for eight years now; it can be really really depressing but it works.
Also, making lifestyle changes. You need to forget the fact that you used to be able to do some things. Now you know that for you to survive you have to let some things go. In all of these things, you need to start putting yourself first. Remember that you are the only one that can actually improve your own health through the kind of changes you made to your lifestyle.
Lupus is not a death sentence, it is a very manageable condition. I’ve known Lupus patients who have had it for over 40 years. I even know one of our Lupus aunties, she’s going to be celebrating her 70th birthday soon and she has lived a really great life. She has gone on to become a professor and even a doctor in the United States. She is doing really well and personally I’m also doing well in my chosen field. So, please do not believe that Lupus is going to hinder you from achieving your goals.
OO: What would you also like to share to people reading about this disease for the first time?
MO: If this is the first time you’re hearing about Lupus, Lupus is an autoimmune disease that causes the immune system to attack healthy organs instead of infections or viruses and other things that it has been created to do.
I would like to say that we need more people to be educated about this medical condition. We need you to support and the best way to do that is to create awareness. Also to support people around you. Understand that Lupus may not be visible on people’s faces but there are different challenges that people with Lupus are going through everyday and the best thing we can offer is support and encouragement. Try not to stigmatise or make people feel like they are not worthy of love or worthy of care or support.
You can also do your research and share with somebody that you know, share that knowledge. May is Lupus awareness month and we’re raising awareness about Lupus. We are doing this because we believe that when there is more awareness, there will be more funding that will go into research that will help us find a cure.
So, this awareness does not stop at only you. Share with your friends, share with family, people around you. Anybody you know might be diagnosed with Lupus and they might just be hiding it because they don’t know that they can get support from people around them.
