Carly G. - Diagnosed at age 28
Since my lupus diagnosis five years ago, my world has changed drastically. After an initial diagnosis of Raynaud’s disease a year prior, my full-blown systemic lupus erythematosus (SLE) diagnosis came three weeks after delivering my second son. At that time, I had trouble walking and experienced terrible pain in my back and pelvic joints.
After physical examinations and more in-depth lab work, lupus was confirmed. Between this news and my postpartum hormones, I battled anxiety and fell into a depression. I had a newborn and a two-year-old, and I knew nothing about lupus. I didn't know what my life would look like moving forward and how it would affect my ability to care for my children. The fear of the unknown was terrifying.
Over the last few years since diagnosis, not only did my symptoms persist, but I was also diagnosed with antiphospholipid antibody syndrome, two lesions of demyelination of the brain and dermatomyositis. I have experienced every emotion possible. I've felt anger, sadness and fear, but when I started feeling numb, I knew I was at my lowest point. I knew I needed to feel in order to fight. I wanted to learn as much as possible about lupus and my other conditions so that I could give myself the best chance at being healthy and being around as long as possible for my family.
I force myself to focus on all the amazing things I'm still able to achieve, and the incredible things my body is still able to accomplish. I was recently able to compete in a 50-mile cycling competition!
Staying focused on the positive remains a daily struggle when you are constantly fighting your own body. Sometimes I fall back into feeling sad and worrying about what my future may look like. It's also easy to succumb to feelings of isolation during this time of COVID-19 when I am forced to watch so much of life through a window in order to stay safe as someone who is immunocompromised. I rely on the support of family and friends, and I'm always able to find my strength when I seem to have lost it. I am hopeful that with continued research and increased awareness that one day there will be a cure for not only lupus but for all autoimmune diseases. Until then, we keep fighting because we are warriors, and warriors never give up.