Spotlight on Women's Health

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.

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.

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.

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.

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.

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.

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.

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.

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.