For about two decades, lupus warriors around the world have used the month of May to raise awareness and educate the public on the physical, emotional and financial impact of the disease. In this interview, a lupus warrior shares her silent struggles with ABIMBOLA ABATTA.

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Misturah Owolabi, a Lagos-based creative copywriter, was diagnosed with systemic lupus erythematosus (lupus) in April 2016. But the symptoms had appeared before then.

Lupus is a chronic autoimmune disease with no cure. It occurs when the immune system, which normally protects the body from infection and disease, attacks its own tissues.

When Owolabi’s symptoms first appeared in January 2016, they were similar to malaria symptoms. She had fever, cold, fatigue, joint, muscle pains and loss of appetite.

She told FIJ that she treated malaria almost every week but the symptoms persisted. Things turned for the worse when she would wake in the morning with swollen face and feet and with sores in her mouth, body, scalp, ears and nose.

To worsen the situation, she had rashes all over her body, especially on the face and chest.

While describing her experience to FIJ, she said: “The rashes felt like my skin had been scorched by heat. My skin was also peeling in strange places, and my hair was falling out so badly. Scars appeared on my scalp where the hair had fallen. That’s when a friend’s mum, who worked at a teaching hospital, suggested we see a specialist. I got there in such a terrible state that I was admitted to the medical emergency ward.”

FIJ learnt the doctors initially suspected a kidney disease because of her swollen face and body. So she had to undergo numerous blood and urine tests, scans, MRIs and X-rays before the doctors called in the rheumatologists who diagnosed her with lupus.

The whole phase before the diagnosis lasted four months, doctors suspecting every disease one could ever think of at every point.

And thus began this warrior’s journey with lupus, a condition that has forever changed her life.

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How has lupus impacted your daily life?

Lupus changed my life … for the worse. I am constantly in pain, but I must continue to show up every day because the world will not stop for me. I’ve had to drastically alter my lifestyle because anything, including sunlight, food, stress and work can set off a lupus flare. Nigeria is difficult for anyone, but with lupus, it is even more difficult.

It is also an expensive medical condition. There are times when the medications are also unavailable, so one must begin looking for them because if I don’t take them, I won’t be able to get out of bed. And the thing about lupus is that even if you’re taking your medication, your body will adapt and cause a flare.

The side effects are also numerous. From weight gain to mood disorders to eye problems and even organ damage. So it’s a battle to keep your immune system from attacking your body while also managing the side effects of the medications. It makes me susceptible to infections. This makes it hard to have a social life because how do I explain that I can’t hang out with my friends all the time because of my health?

Your physical and mental well-being?

Months after being diagnosed with lupus, I was diagnosed with neuropsychiatric lupus, which is the psychiatric manifestation of lupus that manifests as depression, hallucinations and mood disorders. The doctors are still unsure whether this was caused by lupus affecting my brain or a side effect of the steroids I’m taking. The meds cause serious weight gain, especially this moon-shaped face that I totally find annoying, and fat distribution in different parts of my body.

On some days, I wake up with a swollen face, feet, and that’s almost normal now. Hair loss is another side effect of lupus, and it causes a lot of insecurity because losing your hair is the ultimate sign that you’re sick. There are also chronic joint pains that never seem to go away. Even on good days, I’m in pain and unable to participate in fun physical activities as much as I’d like. The sun also causes lupus flares, so I have to do everything I can to avoid it, which is nearly impossible because Nigeria is a sunny country.

Living with lupus is like losing control of your body, both physically and mentally. You have no idea what is going to happen next.

Are there any misconceptions or stigmas associated with lupus in Nigeria?

The most disturbing misconception is that lupus is not a serious disease. People mistake my chubby body for a sign of good living, so I have to constantly raise awareness and explain that the fat cheeks are a side effect of chronic water retention caused by Lupus medications. Many people perceive it as a spiritual attack. Some friends and family have suggested deliverance and even traditional treatment because they believe it must be spiritual forces at work for one’s body to attack itself. Some have even referred to it as eedi and ofa.

Someone once told me to stop taking my medications and have faith that I had been healed. I skipped my meds for three days and fell terribly ill. When I told her, she said my faith wasn’t strong enough, which was why it didn’t work. I once drank an herbal drink that severely aggravated my condition.

Some people also claim that the doctors made up the condition and that they are the enemy, sucking our money and forcing us to spend money in the hospital. Some people even tried to dupe my parents after I was diagnosed, offering them a cure and asking them to buy this and that, and we would have been duped if it hadn’t been for the doctors’ intervention.

There are also times when love interests show up and leave because they fear that it might be a communicable disease. Many lupus patients are turned down for jobs because employers believe a sickler cannot perform well. Some people believe I shouldn’t talk about my medical condition so openly because it’s like washing my dirty linens in public. I’ve had people insinuate that I got lupus because I had lived a reckless and immoral lifestyle in the past so it was God’s way of punishing me.

Have you faced any difficulties in accessing appropriate healthcare and treatment for lupus?

The major challenge has to be buying and getting the lupus medications. Medications for lupus are very expensive and not readily available. During the COVID-19 pandemic, there was a rumor that hydroxychloroquine, one of our lupus medications, could cure COVID. This led to panic buying all over the world. Pharmacies hoarded the drug, and even increased the price by over 400%. That time was especially difficult for the lupus community because many of us needed this medication but couldn’t get it or afford it.

I had to reduce my dose so that the few tabs I had would last until the drug became available again. Only a rheumatologist can manage lupus patients, but because of the limited number of rheumatologists in teaching hospitals in Nigeria, many are unable to access timely treatment or even diagnosis. Lupus patients spend at least N35,000 on treatment each month, and many people are unable to receive treatment because they cannot afford their medications.

How has lupus impacted your relationships?

My health is always one of the first things I tell people about myself when I meet them, not to be pitied or anything, but to provide context so they can understand certain aspects of me. For example, many of my friends know that I can’t do certain things, and they also know what to do when I suddenly fall ill when we are out. They understand that when I say I can’t do something, it’s not because I am lazy.

But many of my relationships have suffered because I’m unable to show up or keep up with them as much as I’d like. Most of the time, I have to prioritise my health over any social outing, which many people don’t understand. Now I’ve come to accept that I might have to be fine with not living a completely normal life because of my health, and I see it as a sacrifice I have to make to be able to endure living with lupus.

Any discrimination in the workplace and challenges in educational settings?

When I first started working, a superior told me to leave my sickness at the door whenever I came to work because there were many healthy people who could take my job. I eventually had to leave. With that experience, I now notify HR as soon as I am called for a job interview of my medical condition and explain exactly what it means to them so that if I am hired, I will not have to deal with certain comments. And this has worked so far. I’ve also had very understanding employers.

While I was in school, I’d miss lots of tests because I was in the hospital. Even when I presented medical reports, some lecturers refused to believe me, so I’d have nothing recorded for my continuous assessment. I was a first-class student before lupus, but I graduated with a second-class upper.

Even when I went for my youth service with my medical report and medications, some of the health officials did not take me seriously when they read the medical report. They told me straight out that they believed I fabricated a medical report after researching the condition online. I’ve received condescending treatment at various points in my life, mostly due to ignorance.

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Are there support systems for Nigerians living with lupus? How effective are they?

Our doctors, especially the rheumatologists at the Lagos University Teaching Hospital (LUTH) and Lagos State University Teaching Hospital (LASUTH), are our biggest support systems.

We also have lupus warrior communities, such as the Labalaba Foundation and the LUREG Foundation, founded by lupus patients. We have WhatsApp groups where we share our experiences, ask questions, motivate one another, and support those who cannot afford their medications or require organ transplants. Some of our doctors are also available in the group chats to answer questions and provide guidance.

For lupus awareness month, the support groups carry out lots of advocacy activities by reaching out to stakeholders in society to donate to and support lupus patients. Knowing that there are people who understand your pain is one of the best forms of support when dealing with lupus.

Personally, my family and friends have been my pillar of strength on days when I feel completely overwhelmed by everything. But, to be honest, no form of support is complete without funds, because many lupus patients cannot afford their medications, thereby worsening their conditions. We’ve lost many warriors to organ failure because of a lack of funds for their treatment.

What is the government doing?

To be honest, advocacy efforts are barely scratching the surface. And the government isn’t doing anything at all. For example, the US government funds lupus research and supports lupus organisations, but this is not the case here. The activities of lupus groups are all we have. These groups have been submitting proposals to the government for assistance, but we have yet to receive assistance from them.

We hope that our voices are heard because raising awareness brings us closer to a cure.