Lupus can be a devastating disease — just ask Minerva Figueroa. Before she was diagnosed, she battled extreme fatigue, trouble walking, painful joints, hair loss, and more. Read our interview with Minerva to see how having lupus might change the way she lives, but it will never define her.
Minerva has spent fourteen years working in the battered women's movement advocating for battered women, abused children, and juveniles. She began her career as an advocate in 1997 while working at RESPOND, Inc., New England's first domestic violence agency. She also worked as an advocate for the Passageway Program at Brigham and Women's Hospital.
In June 2003, she joined the Florida Coalition Against Domestic Violence where she coordinates trainings and oversees a database for 42 domestic violence centers. She has also provided domestic violence education and awareness presentations at the local, state, and national level.
She graduated with honors from Bunker Hill Community College in Boston where she earned a degree in criminal justice. She graduated with a Bachelor of Science in public affairs from Northeastern University in Boston.
How did you know that something was wrong?
I knew something was wrong when walking became more difficult and I was falling asleep at work. The fatigue I felt overwhelmed me. It was very difficult to explain to friends and family. 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.
When and how did you find out you had lupus?
I found out I had lupus in January 2002. Because I had been feeling ill for quite some time, I made an appointment with a rheumatologist at Beth Israel Deaconess Medical Center in Boston, Massachusetts. The rheumatologist examined me and ordered blood work, which confirmed I had lupus.
How has life changed since your diagnosis?
Knowing I had lupus brought feelings of relief and uncertainty, all at once. I felt relieved, because I knew the symptoms I had were real. Having a diagnosis meant my symptoms were not psychological as several of my doctors believed. The diagnosis also brought feelings of uncertainty about my future as a mother and wife. Looking back, my concerns 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.
What are some of the biggest challenges of living with a chronic illness?
Some of the biggest challenges of living with a chronic illness include the lack of knowledge by doctors and nurses about lupus, little or no community resources, restrictions on health insurance coverage, and people's misconceptions about the illness. Luckily, people living with lupus can find support through the online community section of CouldIHaveLupus.gov. And the Affordable Care Act helps people with pre-existing conditions, like lupus, find health insurance through the Pre-existing Condition Insurance Plan.
What are some common misunderstandings about lupus?
Many people don't understand what lupus is. 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 women get. Still others think 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 affects everyone: men, women, children, and teens. While most people living with lupus may not look sick, living with lupus is hard. There are lots of good resources on the Web that can teach people the truth about lupus, like CouldIHaveLupus.gov.
What advice would you give others battling lupus?
I would tell people to educate themselves as much as they can about lupus. Ask your doctor questions about your treatment plan and any medications they prescribe you. Find out if there are resources in your community, like support groups and peer programs, that can help you. Be proactive and involved in all decisions involving your healthcare and well-being. When you have a doctor's appointment, write your questions down ahead of time so you don't forget to ask anything important.
How has living with lupus affected your career?
When I was diagnosed with lupus, I worked full time and went to school at night. Trying to balance both was hard. I missed days of work and school due to lupus flares and medical appointments. Eventually, I withdrew from school. But, after putting my education on hold for five years, I returned to school to get my degree in public affairs.
How has your career as a domestic violence advocate inspired you?
My career as a domestic violence advocate taught me that life is not perfect. As an advocate, I learned that hard times can affect everyone. Each of us faces different challenges, but we do our best in trying to handle them.
How do you balance the demands of living with a chronic illness with your passion for helping others?
I maintain a balance by practicing self-care every day. I define self-care as doing something enriching that makes me feel happy. Self-care for me is about reading history books, spending quality time with my family, and setting time aside for myself. Establishing boundaries between work and my personal life is another self-care technique I use to balance the demands of living with lupus.