Lupus Foundation of America- Georgia Chapter DECATUR, GA, United States
Disclosure: Disclosure(s): No financial relationships to disclose
Aleta McLean, Open Hand Atlanta, Atlanta, GA
Background/Purpose: The months leading up to my diagnosis were frustrating. Initially my hair started falling out. I was told it was stress related. I was working two jobs, so I decided to quit my part-time job if it meant taking care of my health. A few months later, I began to become physically ill. I thought that I may have had the flu because my body ached, I was extremely tired, and I had chills. I went to the doctor thinking they would give me medicine and I would go home, but that didn't happen. I had a fever, so they were trying to figure out why. They did blood work, chest x-rays, and finally told me I had a bladder infection. I was given an injection and sent home with an antibiotic. Three days later my face began to swell and turn red. I went to urgent care where I was told I had an allergic reaction to the medication I was given. I was then given a shot of cortisone and sent home and told to follow up with my primary care doctor. When I followed up with my primary care doctor whom I was meeting for the very first time, because I no longer had the pain, told me I should see an allergist because of my reaction. I made an appointment to follow up with my primary care doctor to receive a complete physical, but that appointment was a month away. I went back to work and continued business as usual. Meanwhile, my face continued to become even more discolored, and I continued to be extremely tired. I was away for a work conference in Washinton DC when I was finally diagnosed. While in the hospital, it took days before they knew what was wrong. I saw all types of specialists: hematologist, oncologist, infectious disease doctors. The last physician that came to see me was a Rheumatologist. She looked at me and said, "I need to run some tests, but you look like you have Lupus".
Intervention: I didn't know anything about Lupus. After being told there was no cure and learning the side effects of the disease and the medications, I became scared and worried. I had so many questions: Will I be able to go back to work? I had been recently promoted, so will I be able to keep my position? If I can't work, how will I be able to pay my bills? Will I have to move back to Philadelphia? How do I explain this to my child? All these questions, and not knowing the answers began to make me angry. I had no previous medical conditions and did not partake in any risky behaviors. Between the emotional distress and the physical affects to my body and appearance my self esteem begam to drop. That's when i joined a support group.
Maintenance: It wasn't until I started attending support group meetings that I began to acknowledge and tell people that I had Lupus. It was there I began to feel encouraged about my story. To see and hear women who are 20 plus year survivors and then to see women who were just as scared, nervous and angry as I was, let me know I can do this. Attending support group meetings also encouraged me to become an advocate. When opportunities arose to be involved, I wanted to be there. I volunteer my time to educate others at health fairs. I attended Lupus Awareness Day at the GA state capitol and in Washington DC. In 2016 I was asked to tell my story on the Georgia Senate floor for Lupus Awareness Day.
Quality of Life: Telling my story helps free me from my pain and gives someone else the courage to tell theirs. I just want to make a difference and I advocate because my life depends on it.
