We are building a stronger lupus community in Africa

It was 2016, and I was 23 years old when I was diagnosed with systemic lupus erythematosus (SLE). My opinion has always been that illness is something that comes and goes. You may get sick for days, a week, or two, but after that you will feel well again and carry on with your life. Lupus is not only chronic but seems to get worse. I am also battling lupus nephritis. It has been the biggest scare for me so far, as it affects the kidneys and might lead to kidney failure in the future.

Lupus has affected my life both physically and emotionally. When I wake up in the morning, I never know if I will have the energy or ability to do what I want or need to do that day. It can be very depressing. My social and professional life has been adversely affected because I am in too much pain or just do not have the energy to interact with people. Most people do not understand that just because we may look “normal”, we feel anything BUT “normal”. I lost my very first job for illness reasons.

I take about eight prescription medications daily; that gets very expensive even with insurance. Insurance does not cover all medications, which limits the relief available. I see about three different doctors, each a specialist, several times a year. Some weeks are filled with doctor visits or tests, which become very tiresome and expensive.

When pain becomes your order of the day, you realise that your days become disordered. My diagnosis with lupus was the beginning of an end to unknown pain and a transition to many unpredictable and challenging days. It was an overwhelming shift and complete overhaul of my once active, spontaneous and carefree life.

My diagnosis took almost five years. In retrospect, I realise the disease may have found its way into my system a while back. I recall occasional joint pains, coldness and numbness of the fingers and toes, and unexplained fatigue. I had been treated for bacterial infections; I think antibiotics knew me by name. After a series of hospital visits and several treatments for numerous diseases, from nerve disorders and enlarged ovaries to pneumonia and magnesium deficiency, I experienced the rash. The facial rash is the most distinctive sign of lupus. It resembles the wings of a butterfly unfolding across both cheeks. That was my turning point. And, like a butterfly, I began to experience life in a way that I never imagined.

One of the most challenging aspects of living with lupus is the lack of awareness around this multifarious autoimmune disorder. Despite the lack of a cure, people can live and thrive with lupus. I have learned to accept my diagnosis. I found a good doctor. I take my medication as prescribed, eat well, and avoid anything that can trigger a flare. The journey is not tranquil, but I keep holding my head up because I am a butterfly warrior.

Today, I use my voice to champion and advocate for people living with invisible illness. Because every single day, many people suffer silently, smiling on the outside while fighting battles nobody else can see. Invisible illnesses are still real illnesses. And invisible battles still deserve visible support.

My journey with chronic illness has shaped my understanding of what it means to be misunderstood. Growing up, frequent absenteeism and the unpredictability of illness often made education a struggle. There were many times when teachers and peers could not understand why I was absent so often, why I could not always participate like everyone else, or why something that seemed simple for others could be physically difficult for me. As I transitioned into a wider society, I encountered another reality: a society with limited understanding of what it means to live with autoimmune and other invisible chronic conditions.

Yet, alongside these difficult experiences, I have also experienced the extraordinary difference that understanding can make. I have been blessed by friends who chose to learn, understand and hold my pain with me in ways I can never fully repay. Those experiences have taught me that an educated and compassionate community can be a game-changer in the life of someone living with chronic illness.

Patient education is also about empowerment within healthcare itself. I have experienced the difference that comes from understanding my body, my conditions, my treatment options, and what does and does not work for me. An informed patient is better positioned to communicate with clinicians, participate meaningfully in decisions about their care, and advocate for themselves.

I believe strongly that quality healthcare is a fundamental human right and that systems should not simply be designed for patients but shaped with them. My work is driven by the hope that fewer people will have to struggle to be understood.

For ten years, I searched for an answer. Symptom after symptom, doctor after doctor, and no name to put to what my body was going through. That search became devastating in 2023, when I lost my pregnancy at 17 weeks. It was in the wake of that loss that I finally received my diagnosis: lupus.

Ten years is a long time to live without answers. There is a particular kind of exhaustion that comes with being unheard, with knowing something is wrong and not being believed, or not being seen clearly enough for anyone to connect the dots. When the diagnosis finally came, it was heartbreaking that it took a loss so profound to get there. But it was also, in a strange way, a relief. I finally had a name for what I was fighting.

Acceptance did not happen overnight. But once I found my footing, I knew I did not want to carry this alone, and I did not want anyone else to have to either. That is what led me to this community: a place built by and for people living with symptoms like mine, people who understood without needing an explanation.

If you are reading this and you are newly diagnosed or still searching for your own answers, I want you to know: you can live with lupus. Not just survive it, but live. Build a life, chase your goals, and lean on people who understand. It will not look like you imagined, and some days will be harder than others. But you are not alone, and you are not without options.

My journey with the Lupus Foundation of Africa has allowed me to understand lupus beyond the diagnosis. Although I do not live with lupus myself, being part of the community has given me the opportunity to listen to warriors and caregivers, learn from their experiences, and see the realities they face every day.

I have come to understand that lupus can affect much more than a person's health. Some of its greatest challenges are invisible, influencing energy, work, relationships, plans and everyday life in ways that may not always be understood from the outside. At the same time, I have witnessed the strength, courage and support that exist within the community.

As a supporter, my contribution is to listen, learn, connect, and help amplify these experiences beyond the community. I want to help families, friends, workplaces and the wider public see lupus not simply as a diagnosis, but as a reality experienced by real people with lives, dreams, responsibilities and hopes.

Back in 2003, I remember vividly how I was running my errands as usual, energetic, and having set my long-term goals in life. Alas! I started having different ailments, from joint pains to chills and fever. At one point, I became immobile, and we had to visit many hospitals, yet there was no improvement. I was devastated; I had lost weight, and my skin started peeling off. I lost hope of living.

Thanks to God, a doctor at St. Mary's Hospital suggested I be tested for lupus. The lab tests were done, and it returned positive for SLE. From then on, hospital visits, admissions and several medications became the norm. I cannot work full time anymore, but I thank God for this so far.

Being in a support group has helped me to cope with lupus, knowing that I have a shoulder to lean on and can express my ups and downs without fear of being judged, and having a family that understands. I am living one day at a time.