This Is What It’s Like To Live With Lupus

Exhaustion
Imagine being in pain and feeling crushed by exhaustion most of the time. That’s pretty typical for many of the 1.5 million Americans dealing with lupus, an autoimmune disease that often damages the skin, joints, and organs. Although the condition affects everyone differently, most patients find that their symptoms ebb and flow: During remission, you might feel perfectly normal; during a flare-up, the illness might seem crippling.Anyone can get lupus, but it’s most commonly diagnosed in women of childbearing age, according to the Lupus Foundation of America. We talked to seven people living with this chronic condition to find out how they manage.
“WHEN I SAY I AM TIRED, PEOPLE THINK I AM JUST A WHINER.”
Tired
“When I say I am tired, people think I am just a whiner.”

“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

“By my early to mid 20s, I was already experiencing severe joint and muscle pain.”
Joint pain
“By my early to mid 20s, I was already experiencing severe joint and muscle pain.”

“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

“Having a strong support system of family and friends has been crucial.”
Group of family and friends
“Having a strong support system of family and friends has been crucial.”

“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

“There were times that I just did not have the physical energy to keep up with my kids.”
Two kids running
“There were times that I just did not have the physical energy to keep up with my kids.”

“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

“My focus is always on finding great skin-care products that will not cause inflammation to the skin.”
Skincare routine
“My focus is always on finding great skin-care products that will not cause inflammation to the skin.”

“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

“Changing my diet has helped.”
Gluten free
“Changing my diet has helped.”

“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.”
Doctors standing in a line
“If you are not feeling better, find another rheumatologist.”

“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

Exhaustion

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