By Winnie Opondo, Program Officer, and Isabel Radoli, Communications Officer
Living Life’s Purposes
I am Winnie Achieng’ Opondo, a vibrant, cheerful, and happy soul blessed to be a wife and a loving mother of two beautiful daughters, aged 14 and 7 years. These two girls are the light of my life. Professionally, I bring energy and passion to my role as a Program Administrative Officer for the “Challenging the Politics of Social Exclusion” program at APHRC. I also coordinate the work of the Health and Wellbeing Theme. Beyond my professional and social achievements, there is much more that defines me—I am a lupus warrior and a passionate advocate for others living with this chronic autoimmune disease.
My Diagnosis Journey and the Struggles Before the Answer
Although I was diagnosed with lupus in March 2018, the path to diagnosis was far from straightforward. For years, I was misdiagnosed and lived with unexplained pain. Looking back, my symptoms likely began in 2012. At the time, frequent hospital visits became a “normal” part of my life as I was treated for everything from bacterial infections to peripheral neuropathy, enlarged ovaries, pneumonia, magnesium deficiency, diabetes, and persistent coldness and numbness in my fingers and toes. Often, I returned from the hospital with the frustrating “nothing was found” report as my health became unpredictable. The African instinct would point at witchcraft. How could I be so sick yet with no diagnosable ailment? I was left in so much confusion and mental agony. Then, one day, I experienced a particularly severe episode—I developed a fever, rapid heart rate, and extreme body pain, leading to my first hospitalization. I was diagnosed with treated for sepsis and pharyngitis, but it wasn’t until a visiting physician noticed a butterfly-shaped rash across my face that I got my real breakthrough. That is the hallmark sign of lupus. The physician referred me to a rheumatologist, and after intense blood tests, the doctor finally confirmed the diagnosis I had missed for so many years. It was lupus.
Dealing with Confusion, Grief, and Emotional Turmoil
The news was both devastating and somewhat relieving. I was filled with mixed emotions. How could I have a chronic and life-threatening condition? However, I was somewhat relieved that after a long and agonizing wait, the disease had a name, and I could get proper treatment. The first days were challenging, and the emotional toll and physical turmoil were overwhelming. I was shifting between the stages of grief—denial, anger, bargaining, depression, and acceptance—as they became my daily companion in the lifelong journey. I was grieving losing my good health. As I struggled with having my family and friends understand what was happening in my life and the severity of the matter, I shut them out and would often cry myself to sleep every day. I struggled to get back to work because I could not concentrate; I was irritable and flipped on any slightest provocation.
Learning to Live with Lupus
Living with a chronic conviction has drastically changed how I look at life. I have become more intentional about how I live and what I prioritize. I have learned that certain things, like too much exposure to sunlight, certain foods, activities, medications, or stress, can trigger a flare-up—a period of illness that can be worse. Two-thirds of people with lupus have increased sensitivity to ultraviolet rays from sunlight or artificial inside light, such as fluorescent or both. These may cause a lupus flare-up, resulting in fever, joint pain, or organ inflammation. I have learned to protect myself and lessen the flare-ups by wearing a big hat, applying sunscreen liberally, and avoiding direct sunlight as much as possible. My medication has become as much a part of my daily routine, even though it can be exhausting at times. I am also cautious about the environments I expose myself to, as infections and germs can trigger flares. I try to keep up with light exercises whenever I can, but joint pains can hinder that. Oh, and I keep an open mind and ride on positivity while finding joy in the little moments!
Embracing Transformation – Like a Butterly!
The most distinctive sign of lupus is the butterfly-shaped facial rash. It resembles the wings of a butterfly unfolding across both cheeks. My first reaction was that it resembled a visible mark of disease, and this changed everything as my life went through a metamorphosis, quite literally. Like a butterfly, I began to experience life in a way I never imagined. The first step was accepting that I had a chronic and life-threatening condition. It did not come easy, though. Now, I keep my doctors’ appointments and adhere to my medication despite occasional fatigue. I also must be mindful of my social interactions, especially being in crowds, since I am easily predisposed to infections. I have learned to listen to my body and respond to it. I can tell when a flare-up is coming because my body communicates with me in a specific way.
My support system has been a crucial part of my life throughout this journey. My husband, daughters, and siblings have seen me at my worst moments, yet they never tire of supporting me. My daughters, especially, are my prayer warriors. Their faith and prayers bring me daily comfort; I believe their asks go directly to God’s ears, and I have seen answers. I also found strength since joining the Lupus Foundation of Africa, which provides a social support platform for warriors, caregivers, and supporters, helping to lessen the burden of living with an invisible yet deadly disease.
Staying Resilient – Dancing in the Rain
Resilience feels like it’s been part of me from the start—how else could I have endured all those flare-ups and pain? My team often says I am the calmest person, no matter the situation. I have learned to balance my emotions: I cry when needed, ignore some things, and laugh through many of my pains and challenges. I believe that what doesn’t kill you makes you stronger. In the words of Vivian Greens, resilience is not about avoiding the storm but learning how to dance in the rain. Over the years, I have worn my best dancing shoes and learned to dance regardless of the heavy rain. I believe not even the rain will stop me.
Navigating Career and Personal Growth
Working in a fast-paced environment can be challenging. Lupus, with its debilitating symptoms like brain fog, fatigue, and pain, can become an obstacle to productivity. Sometimes, you are tempted to call in sick or deliberately run late. Work schedules, deliverables, tasks, and deadlines can be hard to achieve. There are highs, lows, good and bad days. I have learned to remain productive in the workplace with a few adjustments, like scheduling rest periods, prioritizing, flexible work conditions, work-life balance, and asking for support from my colleagues and supervisors. Navigating life and working with a chronic illness is no mean feat. It can be difficult to disclose such conditions at the workplace so as to avoid discrimination.
I have a purpose to fulfill in this life. My story is a testament to strength, determination, and a deep passion for humanity. At work, it gives me immense joy whenever I hear stories of change from the people we work with. Connecting the dots to see how our actions have led to real-world impact keeps me inspired and moving. I always look forward to drawing those connections and piecing together the stories of change that define our work. I also fight every day because I dream of a future where lupus has a cure, and I am determined to be alive to witness that momentous breakthrough. On a personal level, I am raising two incredible daughters, and my greatest desire is to see them thrive and grow into phenomenal women who impact society positively.
Giving a Voice to an Unseen Battle
Speaking boldly about an invisible yet life-threatening condition like lupus has been a powerful way for me to raise awareness. It’s not always easy—many people struggle to understand how someone who looks healthy can be so unwell. Unfortunately, some people assume I am pretending or seeking attention. Despite these challenges, I have chosen to share my journey through social media, TV interviews, and blogs. These platforms allow me to tell my story and shed light on the realities of living with lupus. The response has been humbling from people, both familiar and strangers, often reaching out to say how my story inspires and motivates them to face their challenges, even those unrelated to health.
I am hopeful; I want to have a long and fulfilling life, one where there is a cure for this unpredictable invisible monster that has devastating impacts. Living with a rare yet chronic illness can be frustrating because of the challenges that arise from misdiagnosis, misconceptions, lack of awareness, and the life-altering effects that come with it. People living with lupus need psychosocial support because lupus can affect thoughts, feelings, moods, beliefs, ways of coping, and relationships with family, friends, and co-workers. We also need the support of the healthcare system through early diagnosis and sensitive and effective management of the disease. The government needs to review and implement policies to allow for provisions for autoimmune conditions to ensure that individuals affected by these diseases receive the necessary care and support.
Reflections and Looking Ahead
I am excited about the recent clinical trial that tested chimeric antigen receptor (CAR-T) therapy with about eight people with severe lupus. According to the trial, the participants experienced remission of their lupus and were able to withdraw from their medication for up to three years. Indeed, while this is a very promising and exciting result, it was a very small study, so more research needs to be done to see if it is safe, the degree of its effectiveness, and who it might be most effective for.
Embracing Each Day as a Victory
If I could advise a newly diagnosed lupus warrior, it would be this: it will be a rollercoaster journey. There will be good and bad days, including days when you do not want to do anything. Grieving is okay, but you must face the day when the sun rises. You are a warrior; being a lupus warrior means fighting battles no one else can see and winning with strength no one can imagine. I have learned to value the moments I feel strong and to be patient with myself when I don’t. I take one day at a time and celebrate every day.
Reflecting on my journey, I have become more resilient and empathetic. I am driven to inspire and uplift others navigating similar paths and making a difference every step of the way.