Living with lupus can be life threatening. Research has shown that this chronic illness mainly targets women, which can result to long-term effects like body organ or pregnancy problems. Sibongile Komati reflects on when she found out that she was diagnosed with the chronic illness, 10 years ago, and speaks on the challenges that she had to face and the issue of inadequate service provision in the healthcare sector.
I was diagnosed with lupus 10 years ago. I was not diagnosed with lupus at an early stage. I went through a series of doctors because I had symptoms that came at different times, which did not make it easier to identify the chronic illness. I used to have blood clots, bruises, arthritis in my joints, and migraine amongst other illnesses. I went to different doctors for these illnesses, which did not help. Two of the doctors that I went to diagnosed me with depression and gave me medication for the depression, but I still had other symptoms like chest pains that were developing and not going away.
I then decided to go to a cardiologist, which was how I ended up being diagnosed with lupus, after many months of not knowing what was happening to my body.
I had no idea what lupus was. It was the first time I had heard of that word when I was in that room, and it was very scary being diagnosed with something that you don’t know of or heard anyone talk about. I was, however, lucky to receive support from my family to help me better understand and live with the diagnosis.
My children started helping me with researching about the illness and that was really helpful. I also saw a psychiatrist because of the depression I was also diagnosed with after learning that I had lupus. I found it so amazing that a diagnosis like this changed my life. The first year of my diagnosis, I was in and out of hospital, because of lung complications. I then ended up in a wheelchair and I couldn’t go to work due to breathing problems.
Employers are not educated on lupus as well, so at times they would see you as lazy because today you are at work and then tomorrow you are unable to come in. You also exhaust your leave days and you end up having to take unpaid leave. These were some of the challenges that I faced. I was eventually put on disability leave for five years. After the five years, my employer said they saw no point in me being on disability leave and I was placed on permanent disability and had to stop working.
At that time, there was no foundation or any awareness on lupus which then prompted me to start the Lupus Foundation, to help more people diagnosed with the chronic disease. Since I started the foundation, there have been many other lupus awareness campaigns that have been happening in public. I met two young girls that had lupus as well and one of them became the co-founder of the foundation, but unfortunately passed away from a kidney failure.
I am now unemployed, but I am now focusing more on raising awareness on the disease and helping other people better live with the illness.
People with lupus are mostly diagnosed very late because there are not enough people in the medical sector that always think of lupus first when it comes to diagnosis. I think there are a lot of people who are misdiagnosed and in most instances, public hospitals have very long queues, and it can happen that you may be not be able to go to the different departments and do the different tests to help with early diagnosis. We need support from government to have public healthcare facilities that focus on lupus like we have for other chronic illnesses like high blood pressure for instance. I would advise people to write down their symptoms, so the next time they go to the doctor they can easily help with diagnosis.
The interview has been edited for brevity and clarity.