Belinda Carstens’ story is one of courage, faith, and finding joy even in the hardest of times. Since her lupus diagnosis turned her life upside down, she has faced every challenge with remarkable determination. Through the ups and downs, Belinda has rediscovered herself—whether it’s reigniting her love for music, embracing new physical goals, or inspiring those around her. We’re so grateful she’s shared her journey with us for our Real Lupus Stories series. Her story is sure to remind you of the incredible strength within us all!
Here, in her own words, is Belinda’s incredible journey:
Living with a chronic, incurable illness has a profound way of reshaping every aspect of our identity. Before November 2018, I was an active, independent career woman, thriving in my roles as a dedicated mother and passionate educator. My days were filled with family activities, from planning holidays and events to enjoying walks together. Music played a significant role in my life as well; I found joy in playing the violin, cello, organ, piano, and recorder in church while also nurturing my three children with unwavering support.
In a sudden turn of events, my health declined overnight. It began with fevers, infections, and severe joint pain, starting with an infection in my right temporomandibular joint (TMJ).
By January 2019, I found myself hospitalized for a month, where doctors worked tirelessly to uncover the cause of my daily fever spikes, numerous rashes, mouth sores, and severe pain that hindered my ability to walk, eat, or speak, along with weekly seizures and lesions on my legs. By the end of that month, I was diagnosed with systemic lupus erythematosus (SLE), a chronic inflammatory disease triggered by an infection. Until that moment, I had never heard of lupus and was shocked to learn it could affect the brain—a reality that would soon become my own.
In the wake of my diagnosis, I relied heavily on others for assistance with daily activities, such as washing and feeding myself. I lost my hair and struggled with a lack of appetite. My children, then aged 21, 16, and 14, had never witnessed me so unwell, and their concern was palpable. When I returned home from the hospital, their first reaction was a heartfelt expression of how much they missed my cooking. I could only lay on the couch, a stark contrast to the vibrant life I once led.
During my hospital stay, I was on an intravenous drip for a month, and my symptoms mirrored those of multiple sclerosis. Despite experiencing balance and coordination issues, my cognitive functions remained intact. Doctors were puzzled by the paralysis on the right side of my body, and I often crawled to the bathroom.
I accepted my diagnosis immediately and did not dwell on the “why.” Instead, I chose gratitude for the support surrounding me.
After five long months, I returned to work, albeit with an 18-kilogram weight loss that left me looking frail. I had to come to terms with the reality that I was now battling a disease intent on attacking my joints and possibly my organs. My children often expressed concern, remarking that they could see my veins and bones through my thin skin.
Adjusting to life with a chronic illness felt like watching my life slip away. Simple tasks, like dressing, remained painful. However, in the face of adversity, I made a conscious choice to draw closer to God instead of retreating from Him.
By June 2019, I received additional diagnoses of rheumatoid arthritis (RA) and Sjögren’s syndrome. Despite the limitations imposed by my condition, I taught myself to write, sign, and type with my left hand to prepare my lectures. My passion for my work fuelled my determination.
In 2020, my speech was compromised due to TMJ disorder and ongoing pain, leading to several dental procedures. By 2021, my world was turned upside down once again when my husband decided to end our marriage, an emotional blow that exacerbated my existing health issues. My thyroid gland was affected, leading to periods of unconsciousness due to the toll my condition took on my body.
As my children grew—my son married, my youngest entered grade 11, and my other older daughter pursued tertiary studies—they needed me more than ever. At the start of 2022, I struggled with both emotional and physical weakness for several months, compounded by a persistent sinus flu that heralded more severe consequences.
During this tumultuous time, I committed myself to completing my Taxation Studies, adhering to my motto of pursuing something positive amidst the negativity. I succeeded in becoming a Tax Practitioner, a bright spot in a challenging period.
In January 2023, I received another shocking diagnosis: trigeminal neuralgia, a result of lupus affecting my brain during a month of sinus flu when my body was vulnerable. The following month brought severe spinal pain, yet I clung to my faith and refused to lose hope. The birth of my beautiful granddaughter rekindled my connection with my children, reminding me of the importance of embracing my new reality.
Change can be daunting, especially when it forces us out of our comfort zones.
In January 2024, I found myself once again in the ER due to spinal pain, leading to discussions of potential emergency surgery for a spinal fusion. My surgeon informed me that the combination of lupus and neuralgia would result in excruciating pain.
This moment became a defining crossroads for me. I reflected on what I was willing to sacrifice for the quality of my life. With that, I embarked on a new chapter, no longer allowing fear to dictate my choices.
In February 2024, I began my first of many physiotherapy treatments and joined a walking club. Gradually, my lupus joint, spinal, and RA pain began to lessen. Two months later, I completed a 5-kilometer walk and even participated in two 7-kilometer trail running races.
I embraced pilates and body conditioning classes. Yes, I often felt tired and sore afterward, but I found fulfillment in pushing my boundaries. I honored my body by only participating in exercises I could manage, always mindful of my limitations.
With rheumatoid arthritis affecting my fingers, I found joy in practicing my violin, piano, and organ, using my musical skills to praise God. With consistent practice, my finger flexibility gradually returned.
In June 2024, I was reappointed as an assistant organist in my church and joined the church orchestra as a violinist. While I may not play as I once did, I still find joy in music. I remind myself to believe in my dreams and face my fears head-on.
I continued to pursue my career aspirations, applying to the DHET and being accepted as the external chief marker for Financial Accounting for the Western Cape’s 2024 external exams. However, in July 2024, my neurologist confirmed that my trigeminal neuralgia was permanent and incurable. An MRI revealed that lupus had damaged the nerve in my brain—a diagnosis often referred to as the “suicide illness.” Yet, it is my tenacity and persistence through these hardships that propel me forward.
As someone who once valued privacy, I have come to understand the importance of extending myself to others. Life frequently presents unexpected challenges that test our resilience and determination.
I am living proof that resilience is not merely a response to my lupus suffering; it has become a catalyst for my personal growth, empowering me to inspire others with autoimmune disorders to live meaningfully and positively, rising above their challenges.
Prioritizing self-care allows me to navigate daily challenges with grace and tenacity. I choose to view my struggles as blessings, and I strive to embrace uncertainty, taking each day as it comes. What cannot be cured must be endured—and in that endurance, I find strength.
Belinda’s journey is a powerful reminder of the strength and resilience within each of us. Would you like to share your own lupus story? Your experience could inspire and offer hope to others facing similar challenges. Reach out to us and become part of our Real Lupus Journeys series—your story matters, and together, we can empower one another. Contact Una at hellocpt@andreasgift.co.za for more info.