While I was no stranger to medical issues – from asthma to chest pains and heart complications – I never could have imagined that one day I would be laying in the hospital bed with seventeen multi-sample needles in my arm taking blood.
It was very difficult to explain to friends and family and to this day, I have a hard time explaining how tired I felt. In addition to the extreme fatigue and trouble walking, I also had painful joints, fever, a butterfly-shaped rash, sun sensitivity, and hair loss. My fingers would turn white when they got cold and I got ulcers in my mouth and nose. My ANA antibody levels, which is a part of my cell nucleus, would never go down, and I continued to get rashes and joint pains.
In the early stages of my sickness, I felt like the healthcare system had failed me. There are not many tests given to detect illnesses other than the common colds, and after seven days in the hospital, they then told me that I had Lupus.
Lupus Awareness Month just passed and I’m writing this piece because I want others to know what Lupus is and how you would know if you had it.
Many people wouldn’t understand what lupus is at first glance. I meet people who think lupus can be passed from person to person, or is always fatal. Some people think it’s a form of cancer. Others think lupus is a disease that only Black women get and that people living with lupus will always look sick.
None of those things are true.
Lupus is not contagious. It is not cancer. And it can affect everyone: Men, women, children, and teens. While most people living with lupus may not look sick, living with the chronic autoimmune disease that ragaves different parts of the body is hard.
While people of all races and ethnicities can develop lupus, it occurs two to three times more frequently among African Americans, Asians, Hispanics/Latinos, Pacific Islanders and Native Americans, than among Caucasians. CDC Research shows that lupus affects 1 in 537 young African American women. In their study, researchers found that African American lupus patients are more likely to have organ system involvement, more auto-antibodies, more active disease, and lower levels of social support as compared with their white counterparts. Other research shows that minority women tend to develop the condition at a younger age, experience side effects that are more serious, and have higher mortality rates.
Looking back, my concerns of having this disease stemmed from my lack of knowledge about lupus. Since my diagnosis, I am more conscientious of how I live life. I have come to accept my illness as a part of me, yet I have not allowed the illness to define me.
Although the symptoms can be mistaken for other health issues, it is extremely important to get blood work checked often. The American healthcare system could be better at helping people identify diagnoses like these earlier on without needing to see specialists, but too many women, especially Black women, don’t have access to preventative health care and screenings.
But there are things you can look for on your own and other ways to get involved. Pay attention to chest pains, inflammation and rashes. According to the Lupus foundation, 1.5 million Americans have lupus, and there are an estimated 16,000 new cases each year. Each year in the month of May, organizations like the Lupus Foundation of America and World Lupus Advocates launch international campaigns for governments around the world to increase their financial support for lupus research, awareness and patient services. You can help spread awareness by participating in advocacy days, lupus walks or through social media to educate our peers about this very common disease. The biggest way to help lupus patients is by donating towards research and cures.
Lupus can be a scary disease, but that’s mainly due to lack of information. Understanding and awareness can help to end some of the fear.