“I am so tired most of the time that I have no energy to leave my house. When I say I am tired, people think I am just a whiner, but they have no idea how bad the exhaustion truly is. And I get, ‘But you don’t look sick; you look great,’ all the time. Even my physician said it to me when I first expressed that I thought I had lupus before testing was done.
Even though I feel tired most of the time, I make myself go to the gym daily. I think that I would be much sicker if I didn’t work out all the time, since exercise reduces inflammation and boosts your immune system. It takes everything out of me, and some days I don’t know how I will make it through a workout, but I try to stay disciplined and go anyway.”
—Debbie Sperry, 55
“I started noticing symptoms at age 21. By my early to mid 20s, I was already experiencing severe joint and muscle pain, neuropathy, rashes, seizures, respiratory issues, mental fog, memory impairment, chronic fatigue, and digestive issues. Having all these symptoms at such a young age made it harder to do my day-to-day tasks. They continued to intensify while I was in graduate school, and I worried about whether or not I’d be able to attain my goals and achieve success in my career. Depression and suicidal thoughts often set in.
I ended up finishing grad school and receiving my master’s in social welfare, but since having lupus made me more health conscious, it changed the trajectory of my career. I recently went back to school and received my certification for integrative nutrition health coaching. I’m now a holistic health coach; I help others overcome their chronic condition using food as medicine and other healing modalities such as reiki and visualization techniques.”
—Tara Delgado-Vicedo, 35
“It took about 3 years, three rounds of chemo, and 12 pills a day to finally find a regimen that worked. Now I take immunosuppressants and anti-inflammatory meds, but I also incorporate Eastern medicine into my treatment: I get acupuncture, practice yoga, and drink turmeric and ginger tea.
Now, 5 years after being diagnosed, I’m almost in remission, and I finally feel comfortable in my own skin. Having a strong support system of family and friends has been crucial. I don’t let the disease control me, I control it. Sometimes I win, and other days, I don’t. But in the end, I’m still here and fighting.”
—Vanessa Pellegrini, 39
“When my kids were younger and I’d have a flare-up, it was hard. Taking them to the park, running, playing ball, or riding bikes with them was often out of the question. There were times that I just did not have the physical energy to keep up with them. If I had a major flare-up, I’d have to lie down for hours or sometimes even days to rest. Luckily, I have a phenomenal husband who would always pick up where I fell short so I could rest myself back to health.”
—Lisa Berrio, 53
“As a makeup artist with lupus, I often turn to mineral makeup. My must-have items include color correctors to help with discoloration and hyperpigmentation; a primer with a brightener to bring radiance to dull skin; mineral mascara, which is good for sensitive eyes; and foundation and moisturizer that’s loaded with SPF. My focus is always on finding great skin-care products that will not cause inflammation of the skin.” (Wash all your makeup off every evening with The Rain Facial Cleanser.)
—Brandy Gomez-Duplessis, 46
“After living with a lupus diagnosis for 10 years, I decided that the disease would not define me. So earlier this year, at age 46, I signed up for the Ms. New Jersey pageant—and won. I wanted to share my story and encourage other women with lupus to live. Living to me means taking care of myself and getting my disease under control.
When I was first diagnosed, my doctor initially suggested steroid medication, but I didn’t want to take it because I’d heard a lot about the side effects. We worked together to find a regimen of other drugs, including methotrexate and Xeljanz, that works well for me. Changing my diet has helped, too. My husband and I now eat only organic foods, avoid gluten, and drink lots of water, often infused with lemon or watermelon.”
—Sibrena Stowe-Geraldino, 46
“If you are not feeling better, find another rheumatologist. My first doctor rushed through my exam and told me I had to be patient with the meds she prescribed. Not true! I was diagnosed earlier this year and was really sick for about 4 months, but after changing doctors and trying a different treatment, I’m finally feeling more like myself again.”
—Susan Heins, 55