Before being diagnosed with lupus, I was a healthy, single mom who had a steady job, owned my own home and was active in my church and the community. But then, at 38, things changed.
After experiencing pain in my eye and swelling, followed by loss of vision, I went in for an eye exam. When I told the doctor that I was experiencing joint pain and fatigue, I was sent to a rheumatologist who confirmed I had lupus and started me on eight different medications.
Relieved to have an answer for the pain and exhaustion, the reality of my condition weighed heavy on my ability to work as efficiently and tirelessly as I used to. I lost my job because they didn’t understand what I was going through and told me that I “didn’t look sick.”
This hardship presented me with an opportunity – my disease and I could remain invisible or I could stand strong and use my voice to educate others about what it was like to be affected by a chronic illness.
At the time I lost my job, lupus wasn’t listed on agency websites or seen as a disability. This called for action. I put my story in the local newspaper and asked for people to meet with me and discuss this disease. Sixty-five people showed up and, after 8 years, what started as a simple story in the paper to gather patients led me on in incredible journey, including working to get legislation passed in 2014 in Georgia to recognize lupus as a cause of disability.
My journey to confront the stigma of “you don’t look sick” didn’t end there. In 2017, I was asked to run for state office based on the relationships I had built. In my first year in office, I was able to get appropriations money for lupus research and educate all school nurses across the state about lupus.
The bumps in the road that come along with having an invisible disease are inevitable. That is why I look at this disease as a “comma” in my life, not a “period” or end of the road. As a patient, I have to keep moving to rediscover myself and what I’m capable of.
I am excited for the opportunity to be featured here as a patient spokesperson for RDAM 2020 and hope that my story will bring awareness and encouragement for others to join in this month and participate whether through sharing their own story or educating others.