My name is Kabbaong and I am 17 years old. As a child, I experienced some pain and fatigue, but until the summer before I entered the fifth grade, when I was 10, it never seemed like that big of a deal. That general pain, and increasing fatigue, sort of became my “normal.” That all changed when I was admitted to the hospital with gallstones and had to have surgery.
After surgery, I was not discharged due to “complications.” Most of this time is a blur for me, but I do specifically remember sitting up in my hospital bed, eating lunch, surrounded by my family, when I was told that I had been diagnosed with lupus.
That diagnosis brought many, many changes. At such a young age, I now had to pay much more attention to my diet, become better at listening to my body, and, of course, the meds. I went from someone who would maybe take an aspirin here and there to having to learn about and manage a new regimen of medications. I was a person who needed medication, and I had never seen myself in that light before. Managing my medications has been the biggest – and most difficult – change in my life since my diagnosis.
Of course, lupus brings many other challenges, and I am greatly appreciative of the people in my life who help me manage them. From the start, I have had very understanding teachers. I have a good medical team that helps me understand how lupus is affecting my body, and works to find the best treatments for me. I have been seeing a therapist, which has made a world of a difference in terms of my mental health. As difficult as managing the physical symptoms of lupus can be, it also takes a psychological toll. I am a person who happens to have lupus, but sometimes it can feel like lupus is my identity. People may see me, but they also see lupus attached to me.
Most importantly, my family knows what I am dealing with and has always had my back. Lupus can be hard to explain to people, and honestly sometimes I just don’t want to. When I was initially diagnosed, my sister helped me understand what lupus was, and how it could affect me. My brother would go with me for walks in the park with our two German shepherds, making sure I was staying active without overdoing it or spending too much time in the sun. No matter what lupus throws at me, I know that my family will always be there to help and support me.
When I was in first grade, I said wanted to be a nurse, and that is still true today. I am very interested in science, and as a result of my lupus journey I have a much better understanding of the important role that nurses play. As I prepare to go to college, I plan to follow a pre-nursing track and get my BS in nursing. Over the years I have learned that while lupus may be a difficult and unpredictable disease, having a strong support system and a good healthcare team behind you can help make it more manageable. I know that everything that I’ve learned along my lupus journey will allow me to better help others.
I am honored to share my story because I believe that with your support, we can better understand, treat, and one day eliminate lupus. Because of the work done by the Lupus Foundation of America, Wisconsin Chapter and their supporters, more people will know about the effects of this cruel disease. Without your support, none of this is possible. Help me and the thousands of people in Wisconsin suffering from lupus with a donation today. With your help, we CAN find a cure!