7 People on What It's Really Like to Have Lupus

Selena Gomez is finally opening up about the real reason she took some time off in 2013: The pop star was busy with treatment for lupus.

In a new interview with Billboard, the actress-singer, 23, explained that she underwent chemotherapy for the autoimmune disease amid intense fan and media speculation (some reports said she was in rehab for addiction, adding insult to injury) about why she was keeping a low profile.

“I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke,” Gomez told the magazine. “I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re a–holes.’ I locked myself away until I was confident and comfortable again.”

RELATED: 9 Celebrities With Lupus

What is lupus?

Short for systemic lupus erythematosus (SLE), lupus is a chronic autoimmune disease that occurs when the body’s immune system attacks its own healthy organs and tissues— and it can often take years to diagnose. Lupus can also sometimes be mistaken for other illnesses. Why? The symptoms are often non-specific and vary widely, such as fatigue, joint pain, swelling, fever, and rashes, especially what’s called a “butterfly rash,” which stretches across both cheeks and looks like a sunburn.

The inflammation caused by lupus can harm everything from the kidneys, skin, joints, and blood cells, to the lungs, brain, and heart. However, the physical and mental implications of the condition can be vastly different from person to person.

Because lupus is not only tricky to diagnose, but also tricky to understand, we asked several people living with lupus to share what it’s really like, what they wish people knew about this disease, and how they push forward. Here are their stories.

“Many people say that we ‘don’t look sick’ when there is a battle raging inside of us.”— Sharon Harris, 36, founder and president of Lupus Detroit

Harris, who was diagnosed at 23, has experienced it all over the past 13 years: from the “butterfly rash” to swollen joints. She is now recovering from a recent stroke.

“One day, I washed my face and brushed the washcloth across my eyelashes. [It] stopped me dead in my tracks. I was too exhausted to scream but it knocked the life out of me so much so that I had to sit on the edge of the tub to regroup,” Harris says. “My eyelashes hurt—I will never forget that.”

But on the other extreme, Harris says there are days she feels like she can run a marathon. “See, lupus just isn’t a physical disease. It’s also mental. On my good days, my mind is clear and at peace, my movements are fluid.”Her mantra: Avoid negativity at all costs, and love yourself. “You might be hairless, you may have a butterfly rash, your knuckles may be as swollen as large as lemons, but you still matter.”

RELATED: 9 Celebrities With Lupus

“I’ve had folks tell me, ‘At least it’s not cancer.'” — Ayanna Dookie, 34, stand-up comedian

Nov. 9 2012: Dookie will never forget the day she got her official diagnosis of SLE. She didn’t have any of the telltale symptoms of lupus, except for joint pain in her wrist that just wouldn’t go away.  It wasn’t until her doctor ordered blood tests that it all lined up.

“A horrible day feels like I’m un-rested, like barely-can-keep-my-eyes-open-tired, my joints are aching, and my back is aching from the inflammation in my lungs,” Dookie says. “Performing basic functions is the biggest obstacle in the world, and it feels like the flare will last forever.” In other words, it’s not cancer, but it can still feel overwhelming.

Instead of waiting for her illness to fill up her schedule, though, she stocks her good days full of other activities and listens to her body about when she needs to cut back. This month, Dookie had a busy calendar with stand-up performances, and she even signed up for an inflatable obstacle course 5K run with friends.

“Maintaining good health isn’t just a physical journey,” she says.

“I had to give up a lot of my old life.” — Kristin Jones, 30, knitwear designer

Jones’ journey with lupus began just over a year ago, and while it’s required some major changes in her life, she’s learning how to live a full life with lupus.

“I’m having a great day, then it’s like I’m back to my old self. But I’m not, I’m still sick—and so no, I can’t go ride bicycles or go for a run,” she says. “Stretching for 10 minutes a day is really strenuous activity for me—and that’s something that people just don’t understand because when I’m sitting and talking to you, most of the time I seem normal.”

Still, Jones adds, “While your life does change and limitations change, that doesn’t mean you can’t be happy and fulfilled. Find your own new space in the world.”

RELATED: 8 Signs and Symptoms of Rheumatoid Arthritis

“The hardest part for me, hands down, is the health insurance component.” — Dana Whitney, 42, communications vice president.

At 17, Whitney noticed her first symptoms, sore muscles and a rash, which she thought was just a sunburn at first. But her mom, who also had an autoimmune disorder, became frantic when things got worse and took her see a rheumatologist, who diagnosed her with lupus.

“Unfortunately, my family did not have medical insurance at the time,” Whitney explains. “We had to wait a few months to pursue treatment in order to line up health insurance, so those first few months of high school were pretty tough.”

“It’s driven a lot of my career decisions in life” because of the insurance component, she says. “[But] the best parts are getting good news from doctors. ‘No more chemo, let’s come down on your drugs, that sort of thing.’ I’ve been healthy for quite some time now, and it’s great. It can happen.”

“It’s hard to talk to people about what you’re feeling and have them really understand why and how you’re so tired.” — Jessica Goldman Fuong, 32, author and founder of the blog Sodium Girl

Fuong comes from a long line of women with autoimmune diseases. But it wasn’t until days after her 21st birthday when an lupus attack on her brain and kidneys occurred; blood tests later revealed lupus.

One of her tricks is adjusting the language she uses, both with herself and with her loved ones. Case in point? She embraces the word “maybe.” Fuong said, “I hate feeling like a flake. But now, by always saying maybe, I give myself an easy out when needed. And I set realistic expectations with friends.”

She also refuses to use words like “sick” or “tired.” For example, “For energy level, using a one to 10 scale—one being the energizer bunny and 10 being a sloth after a night in Vegas—humor never hurts, too,” she said.

“There are days when I feel great.” — Ingrid Harrell, mid-40s, teacher

Harrell was diagnosed in 2011 after suffering from chronic joint pain that caused a limp.

Ingrid, too, described the heavy effects of fatigue and how it takes a toll on relationships with friends and family. “They write me off as a flake or a hypochondriac when this illness can really take a huge toll on your body,” she said.

Her advice for others: Give yourself a break. “For me, stress is a huge trigger for inflammation. I would advise avoiding stressful situations if you can and paying very close attention to your body. Pushing yourself too hard can lead to much more serious side effects,” she explained.

RELATED: 13 Ways Inflammation Can Affect Your Health

“The most common misconception is that lupus is not a disease that affects men.” — Anthony Turk, 47, publicist

Turk, who has a family history of lupus, was diagnosed in his 20s. Regardless of what he did to take care of himself, he ended up getting sick with colds and the flu, and suffered joint pain. It wasn’t until a doctor friend noticed the telltale butterfly rash on his face that he made an appointment and got a formal diagnosis.

While lupus is more common in women, anyone can get it. “Male lupus patients are being diagnosed with the disease everyday,” Turk says. “Lupus symptoms come in many different forms and not everyone has the same symptoms. Also, not all Lupus patients have the same severity of the disease.”

And one of the trickiest things, Turk says, is learning how to keep up with an unpredictable disease. “I have to be able to determine when I am too tired or run down and rest before I send myself into a lupus flare up. Also, I have to try and keep my stress level at bay because stress can send me into a flare up too.”

Still he adds, “This may sound strange, but it has been what’s kept me going amid some difficult times. If you love your lupus and embrace it and take care of it, you can better control it and you can keep it from controlling you.”

RELATED: 15 Diseases Doctors Often Get Wrong

Pregnancy Results Good for Women Who Have Lupus

By Amy NortonHealthDay Reporter

MONDAY, June 22, 2015 (HealthDay News) — Not long ago, women with lupus were often told pregnancy was too risky. But new research confirms that when the disease is under control, women usually have healthy pregnancies and babies.

The study, of 385 pregnant women with lupus, found that 81 percent gave birth to a full-term, normal-weight baby.

It’s not always an easy road, though, the researchers found. And some women — including those with high blood pressure and symptom flare-ups during pregnancy — had higher risks of complications, including pregnancy loss and preterm delivery.

Black and Hispanic women also faced greater risks than white women, for reasons that are not fully clear, experts added.

The study, published in the June 23 online edition of Annals of Internal Medicine, reinforces what many doctors are already telling women with lupus: If you plan for pregnancy and get your symptoms under the best control possible, your chances of a healthy pregnancy are high.

Still, that confirmation was needed, said Dr. Bevra Hahn, who wrote an editorial published with the study.

“The teaching that disease activity is an important harbinger of poor [pregnancy] outcomes was not universally accepted before this study, because of the limitations of prior [research],” said Hahn, a rheumatologist at the University of California, Los Angeles, Medical Center.

“This study puts the matter to rest,” she said.

Lead researcher Dr. Jill Buyon agreed. “We’ve come to a time where we’re telling women with lupus, ‘Yes, you can become pregnant,'” she said. “This study provides reassurance that we’ve been doing the right thing.”

But just as important, Buyon added, the findings give a clearer picture of which women are at greater risk of pregnancy complications.

According to Buyon, that doesn’t mean a woman with a risk factor should not become pregnant — but that she and her doctor should be prepared.

“We’ll be able to use this information for counseling patients,” said Buyon, who directs the rheumatology division at NYU Langone Medical Center, in New York City.

In lupus, the immune system attacks the body’s own tissue, and the onslaught can have widespread effects — damaging the skin, joints, heart, lungs, kidneys and brain. The disease mostly strikes women, usually starting in their 20s or 30s.

Treatment includes immune-suppressing drugs and other medications to control symptoms, which range from fevers and joint pain, to extreme fatigue, to depression and memory problems. Even with treatment, though, people with lupus often have symptom flare-ups.

“Twenty years ago, if a woman with lupus asked her doctor if it was safe to become pregnant, the doctor would probably say it’s too dangerous,” Buyon said.

The concern was both that pregnancy would exacerbate a woman’s symptoms and that her baby would be at risk. In recent years, though, doctors have learned that with the right care, women often have a healthy pregnancy.

The new study, done at eight U.S. and one Canadian medical center, is the largest one yet to follow pregnancy outcomes for women with lupus.

Overall, 19 percent of the women had an “adverse outcome,” such as stillbirth, preterm delivery or an underweight baby. But the risk varied depending on several factors.

The strongest risk factors were using blood pressure drugs or having antibodies called lupus anticoagulants, which can cause blood clots. Those women were seven to eight times more likely to have a pregnancy complication, versus other women.

In addition, while most women did not have lupus flare-ups during pregnancy, those who did faced a higher complication risk.

When it came to race, black and Hispanic women had higher risks: 27 percent and 21 percent, respectively, had some type of pregnancy complication.

Buyon said the reasons for the racial difference are unclear, but access to health care probably does not explain it, since all study patients were receiving care.

Hahn said she suspects genetic influences play a role — though environment, like diet or exposure to pollution, could also be at work.

As for the other risk factors, Buyon said more research is needed. She did stress, though, that in the case of high blood pressure drugs, it’s the underlying condition that threatens a healthy pregnancy.

“It’s not the drugs,” Buyon said. “We don’t want women to think, ‘Oh, I’ll just stop taking my medication.'”

She and Hahn both advised women with lupus work with their doctor in advance of becoming pregnant, to make sure their disease is under control. Certain lupus medications also have to be stopped before pregnancy.

Once a woman becomes pregnant, Buyon said, both her rheumatologist and a maternal-fetal medicine specialist — or obstetrician who specializes in “high-risk” pregnancy — should be involved.

“Be sure your doctor knows how your lupus is doing, and that you keep [the disease] as quiet as possible,” Hahn said. “Watch your blood pressure and communicate about it. Be sure your lupus anticoagulant has been measured, and discuss the various strategies you might choose with your doctor.”

Anti-clotting medications, such as low-dose aspirin, may be an option for women with lupus anticoagulant.

More information

The Lupus Foundation of America has more on lupus and pregnancy.


What to Know About Lupus, the Condition That Led to Selena Gomez's Kidney Transplant

Selena Gomez announced on Instagram this morning that she underwent a kidney transplant over the summer, and that her good friend Francia Raisa was her donor. The 25-year-old singer revealed in 2015 that she had received treatment for lupus, and she said today that the transplant had to happen because of her disease.

“It was what I needed to do for my overall health,” Gomez posted, along with photos from her hospital bed and of her transplant scar. She added: “Lupus continues to be very misunderstood but progress is being made.”

To learn more about lupus and why complications from this chronic illness can lead to kidney failure, Health spoke with physicians who have treated others with the condition. Here are six lupus facts you should know.

RELATED: I Ignored My Autoimmune Disease Symptoms—and Made It Worse

Lupus can affect the entire body

About 1.5 million Americans have lupus, an autoimmune disease that causes the body to attack its own tissues. “Instead of the immune system fighting off things like infection and cancer, it turns against the individual and starts acting on their own organs,” says Gary Gilkeson, MD, professor of medicine at the Medical University of South Carolina.

For about half of those with systemic lupus erythematosus—the most common type of lupus—a major organ like the kidneys, heart, lungs, or brain will be damaged by the disease. Kidneys are commonly affected, says Dr. Gilkeson, because autoimmune proteins can be deposited there. This causes inflammation and can, over time, lead to kidney failure.

Lupus symptoms vary widely 

Because lupus can manifest in so many different ways and affect many different organs, symptoms can vary a lot from person to person—and this makes the condition tricky to diagnose. The most common symptoms include fatigue, joint pain, swelling, rash, and fever, but these signs may not be obvious, or they may be misdiagnosed as another condition.

There is also no lab test for lupus, so it has to be identified by first ruling out other conditions. A 2015 study in the Annals of Rheumatic Diseases found that it takes nearly six years, on average, from the time people notice their first symptoms to the time they receive a correct diagnosis.

Gender and ethnicity can play a role

More than 90% of lupus cases occur in females, says Dr. Gilkeson, and the disease is more common in Hispanic and African women than in Caucasians. According to the Lupus Foundation of America, most people first develop symptoms between ages 15 and 44.

Lupus can be genetic; about 20% of people with lupus have a parent or sibling who has or will develop the disease. People with lupus are also likely to have family members with other autoimmune diseases as well.

RELATED: Selena Gomez’ Comfortable Fall Shoes Are Only $85

Treatment for lupus can include pain meds and chemo

Depending on a person’s symptoms and disease severity, they may be able to manage lupus flare-ups with pain relievers and anti-inflammatory medicines. Others will need immunosuppressant drugs or even chemotherapy to treat the condition.

Complications from lupus may also need to be addressed, like transplants for damaged kidneys. There is no cure for lupus, but the disease can go into remission—meaning that a patient no longer experiences symptoms. With the right treatment, 80 to 90% of those diagnosed can expect to live a normal lifespan.

A kidney transplant can be good news

Even though lupus can damage the kidneys, doctors won’t typically perform a transplant until a patient is in remission, says Robert Montgomery, MD, director of the Transplant Institute at NYU Langone Health; otherwise, the active disease would continue attacking the new kidney just like it did the old one.

When a person’s lupus is under control, however, the majority of kidney transplants are a success—especially those with live donors. The patient takes immunosuppressant drugs that not only protect the new organ from future attacks, but also helps keep lupus in remission overall.

RELATED: 15 Weird Risk Factors for Kidney Stones

Transplant recovery tends to be quick

It usually takes about six weeks for a kidney-transplant recipient’s incision to fully heal and for the person to get back to heir normal activity. (In one Instagram photo, a substantial scar stretches across Gomez’s lower right abdomen.) Donors typically have it a little easier, says Dr. Montgomery: Their kidney is often removed laparoscopically (with very tiny tools), which involves about a 3-inch incision near the bikini line.

For someone in Gomez’s situation, prognosis is generally very good, says Dr. Gilkeson. “She can lead a normal life after this,” he says. “Have children, do whatever she wants. She will be on medicine that suppresses her immune system, so she’s more susceptible to infection—but common sense precautions are all that are needed.”

Selena Gomez's Mom Felt 'Helpless' During Singer's Transplant But 'Also Gained Another Daughter' in Francia Raisa

This article originally appeared on People.com.

Selena Gomez‘s mother, Mandy Teefey, is opening up about the kidney transplant that helped save her daughter’s life.

The mother of two, 41, shared an emotional message on Instagram Sunday, along with a photo of Gomez, 25, and best friend Francia Raisa, who donated her kidney, holding hands from their hospital beds.

“This picture is one of the most breathtaking images that will live with me forever. For all those moments of not knowing if we were going up or going down, I can always come back to this picture and know we can always make it back up,” Teefey wrote.

“As a mother I was helpless, scared and all I could do was pray for both of them, Francia’s beautiful family. I am pretty sure I am banned from that hospital. Mama Bear was in high gear,” the 13 Reasons Why producer continued.

Concluding, “Selena gained a kidney, I was able to keep my little girl, but I also gained another daughter….thank you to everyone who was there for Sel, Francia and our families. We survived from all the love, prayers and God.”

On Thursday, Gomez revealed that the reason she quietly stepped back from her career over the summer was that she was recovering from a kidney transplant in hopes of aiding her battle with the chronic autoimmune disease Lupus.

“It was what I needed to do for my overall health,” the singer captioned the same hospital beds photo on Instagram.

Raisa’s mother, Virginia Almendarez, recently recalled the emotional reaction Teefey had following their daughters’ transplant surgery.

“She gave me a big hug and said, ‘I don’t know what to say,’ ” Almendarez told Telemundo’s Al Rojo Vivo on Friday.

Selena Gomez's BFF Francia Raisa Proudly Shows Off Her Scar in Stunning Look at PEOPLE's Ones to Watch Party

This article originally appeared on People.com.

She is one of the bravest women in showbiz and, it seems, also one of the most stylish.

Francia Raisa stepped out at PEOPLE’s Ones to Watch Party on Wednesday night wearing a stunning all-white glittery pantsuit ensemble.

Styled by Lo VonRumpf, the actress, 29, looked chic in cream-colored pants and a see-through diamond-encrusted bodysuit with a scoop neck as she chatted with Auli’i Cravalho at NeueHouse Hollywood.

She completed the look with a long-sleeved cream jacket with diamond patterns, nude heels and sleeked-back hair.

Raisa’s sheer bodysuit showed off her figure and her surgical scar from where she had a kidney removed and donated to best friend Selena Gomez.

Raisa made headlines in September when the “Fetish” singer, 25, revealed Raisa had been her donor.

The singer shared a photo of the longtime friends holding hands from their hospital beds, writing in the caption, “There aren’t words to describe how I can possibly thank my beautiful friend Francia Raisa.”

“She gave me the ultimate gift and sacrifice by donating her kidney to me,” Gomez continued. “I am incredibly blessed. I love you so much sis.”

In a 2013 interview with Latina, Raisa shared that she met Gomez six years before when Disney and ABC Family (now Freeform) had the stars of their shows visit a children’s hospital.

“Selena and I were in the same group and we just clicked,” Raisa said.

Raisa has recently appeared in episodes of The Mindy Project, the Netflix show Dear White PeopleBlack-ish and will appear in its spin-off Grown-ish in 2018.

Selena Gomez's BFF Francia Raisa Reveals Why She Decided to Give Her a Kidney

This article originally appeared on People.com.

Selena Gomez and Francia Raisa are ready to talk — together.

The “Wolves” singer, 25, shocked fans in September by announcing that, due to lupus complications, she’d received a kidney transplant from her best friend Raisa over the summer. The two pals sat down with Today for a joint interview about the surgery, recovery and the months since.

“My kidneys were just done,” Gomez told Savannah Guthrie. “That was it, and I didn’t want to ask a single person in my life. The thought of asking someone to do that was really difficult for me. She volunteered and did it. And let alone someone wanting to volunteer, it is incredibly difficult to find a match. The fact that she was a match, I mean that’s unbelievable. That’s not real.”

Raisa was sharing a house with Gomez when she realized how weak her friend was becoming.

“One day she came home and she was emotional. I hadn’t asked anything. I knew she hadn’t been feeling well,” the Grown-ish actress said. “She couldn’t open a water bottle one day. She chucked it and she started crying. And I said, ‘What’s wrong?’ and that’s when she told me. And she goes, ‘I don’t know what to do. The list is seven to ten years long.

She continued, “It just vomited out of me: I was like, ‘Of course I’ll get tested.’”

Raisa explained that because they were in an “emergency situation,” she completed her testing in a day — a process that usually takes about six months.

Before the surgery day, the girls had a friend French braid their hair and ate a big meal. But the fear was certainly there.

“I had to write a will, which was scary because there’s no guarantee I’ll wake up,” Raisa said.

Raisa went into surgery first and everything went well. Gomez also woke up from her procedure feeling fine but realized an excruciating pain as she tried to nap.

Doctors told Gomez that she would have to go back into surgery, as her new kidney was turning around inside her body.

“My teeth were like grinding, I was freaking out,” Gomez explained. “It was a six hour surgery that they had to do on me, and the normal kidney process is actually two hours.”

She added, “Apparently one of the arteries had flipped. I’m very grateful that there are people who know what to do in that situation.”

The recovery process was tough. The women were unable to do anything, from putting on underwear to taking a shower, without assistance. Gomez also said that they were on bed rest and only allowed to walk for an hour each day.

But they were together, as Gomez ensured they were recovering at a place alongside each other.

“You feel she saved your life?” Guthrie asked the singer.

“Because she did,” Gomez replied.

Gomez and Raisa, 29, have been friends for a long time. In a 2013 interview with Latina, Raisa shared that she met Gomez six years before, in 2009, when Disney and ABC Family (now Freeform) had the stars of their shows visit a children’s hospital. At the time Raisa was starring in The Secret Life of the American Teenager and Gomez in Wizards of Waverly Place.

“Selena and I were in the same group and we just clicked,” Raisa said.

But eight years after they first “clicked,” the actress’ friendship reached a new level when Raisa was found to be a match for Gomez. “There aren’t words to describe how I can possibly thank my beautiful friend Francia Raisa,” the singer said while revealing news of her surgery. “She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed.”

Gomez has been open about her battle with lupus for several years, and first revealed in 2015 that she’d undergone chemotherapy to treat the disease. Lupus causes the immune system to attack its own organs and tissues and can affect the whole body. According to the Lupus Foundation of America, about half of all cases of systemic lupus affect a major organ such as the heart, lung, kidneys or brain. In some cases, it can take years for the disease to be diagnosed and properly treated.

Last month PEOPLE spoke with a doctor who specializes in transplants for people with immune diseases including lupus, Robert Montgomery, MD, director of the Transplant Institute at NYU Langone Health. Dr. Montgomery told PEOPLE that it’s common for lupus to damage kidneys to the point where one or both need to be replaced. “Not every patient who gets lupus ends up with kidney failure, but some do,” he said.

When lupus patients need organ donations they are often added to a waiting list to be matched with a deceased donor, and they may have to go on dialysis for kidney failure while they wait months or even years. In Gomez’s case, she had Raisa to serve as her live donor, which Dr. Montgomery said is a “great advantage” because “live donor transplants last twice as long, on average, as deceased donor kidneys.”

Raisa said the experience brought them even closer. “I am beyond grateful that God would trust me with something that not only saved a life, but changed mine in the process,” she said.