Lady Gaga doesn’t have rheumatoid arthritis but one woman who does explains what it’s like

Lady Gaga isn’t suffering from arthritis, despite media outlets claiming that was the case last week.

She appears on the cover of Arthritis magazine with a caption that reads: “I fought RA pain with my passion.”

But that quote isn’t from Lady Gaga. Instead she’s interviewed in the magazine about the chronic pain she’s been suffering with for years.

During her Born This Way tour in 2012, a severe hip injury forced the singer to cancel the rest of her shows.

In the interview, Lady Gaga says she has synovitis.

It’s a common symptom of rheumatoid arthritis and happens when your joints are inflamed but it can also be caused by overuse or injury.

“I hid my injury until I couldn’t walk,” Lady Gaga told Arthritis Magazine. “I had a tear on the inside of my joint and huge breakage.

“The surgeon told me that if I had done another show, I might have needed a full hip replacement. I would have been out at least a year, maybe longer.”

Last November, Lady Gaga posted two photos of herself on Instagram, showing how she eases her pain by getting her shoulders massaged and sitting in a sauna.

It’s a common misconception that rheumatoid arthritis only affects the elderly.

People as young as 15 can develop the condition, as Emily Jones tells Newsbeat.

Emily Jones is a 21-year-old student at Cardiff university. She was diagnosed with rheumatoid arthritis aged 15, a week before her GCSEs.

She tells Newsbeat: “It’s been an uphill struggle ever since, but it’s got better year on year.”

It started with knee pains, but Emily says she went to the gym regularly so thought she’d just injured herself and stopped going.

But, it only got worse. So after countless visits to doctors, as well as blood tests and rheumatologist sessions, Emily was finally diagnosed.

‘It can happen to you at any age’

“It’s not like osteo-arthritis which old people get from wear and tear, and I’d never heard of it before, so it was completely out of the blue.

“I remember crying a lot because I was in so much pain, I couldn’t get dressed because I was in agony, and I couldn’t brush my hair. My mum had to do it.”

Emily tells Newsbeat: “I shut down, I just cut off. I could not be emotional because I just needed to get on with it and get through it.

“That’s the only way I felt I could deal with that amount of pain.”

Image caption Emily has seen a huge transformation in her life since the age of 15

Emily suffered from stiff hands in the mornings and achy knees, and sometimes couldn’t walk down the stairs and would just stay in bed.

“I can’t really remember that summer because I blocked it out. I missed all my GCSE exams, so I just got predicted grades,” she says.

“I couldn’t move my fingers in the end, so when I had a GCSE art exam I couldn’t squeeze paint into the pallet because I had no movement left.”

Emily had to trial a lot of drugs before she found one which eased her pain.

Now she’s on a biological drug and will have a drip infusion at the hospital once a month for the rest of her life.

“I can’t even describe the difference between then and now,” she says.

“I go to the gym four times a week, I’m studying at university and I just spent two months backpacking in south-east Asia.

“I’m pretty stubborn and I don’t want my condition to get in the way of anything I want to do.

“I can’t wear skinny jeans because they hurt my knees and I’m not very good with high heels but that is it.”

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In mid-September, pop singer and songwriter Lady Gaga announced she was postponing the European leg of her world tour until early 2018 due to “severe physical pain.” She explained on Twitter, “I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more.”

Six days later, she disclosed that the pain witnessed by viewers of the new Netflix documentary Gaga: Five Foot Two is from fibromyalgia, a condition associated with widespread chronic pain, fatigue, memory problems and mood changes.

With this big reveal, Gaga and her high-wattage celebrity have shined perhaps the brightest light yet on a widely misunderstood condition, one that even some doctors still dismiss.

By going public about her fibromyalgia, she hopes to “raise awareness & connect people who have it,” she tweeted.

On social media, while many fans voiced their encouragement, some people accused Gaga of making up or exaggerating her pain. But fibromyalgia patients – and experts – know the chronic pain and incapacity people with fibromyalgia experience is all too real.

Our understanding of the condition “has continued to increase dramatically,” says Daniel Clauw, MD. Dr. Clauw, professor of anesthesiology at University of Michigan and director of the Chronic Pain and Fatigue Research Center, is not involved with Lady Gaga’s treatment.

What Is Fibromyalgia?

Fibromyalgia causes ongoing, widespread musculoskeletal pain and other symptoms that can include severe fatigue, sleep problems, memory problems, digestive and bladder disturbances and depression. Expert consensus is that symptoms are due to a central nervous system that “turns up the volume” on pain, and may even simply create it.

“There’s overwhelming evidence that this is primarily a brain-central nervous system problem,” says Dr. Clauw.

He uses an electric guitar analogy: The strings are the sensory nerves in the periphery, or limbs, of the body, and the amplifier is the central nervous system (the spinal cord and brain), which makes the sound louder when the strings are strummed. In people with fibromyalgia, says Dr. Clauw, “The amplifier is set too high.”

This may be due in part to an excess or lack of certain neurotransmitters (brain chemicals) that either encourage or discourage nerve cells to fire.

In addition to pain, other sensory experiences may be amplified – noises may be louder, lights brighter.

How Is It Diagnosed?

There is no lab test to diagnose fibromyalgia. Diagnosis is made based on criteria developed in 2010 by the American College of Rheumatology. While older criteria stipulated a minimum number of specific “tender” points, the newer ones rely on widespread pain index and symptom severity scale scores.

Who Gets It?

An estimated 6 percent of the population has fibromyalgia. Twice as many women as men develop it, which Dr. Clauw says is the same ratio as in almost all chronic pain conditions.

Some experts suspect people who develop fibromyalgia may have genes that make them more susceptible to the condition. It’s thought that a major stressor – physical or mental – or an infection can turn that susceptibility into symptoms.

“It occurs much more commonly in people who have had early life stress, early life trauma, and we will very often see individuals who’ve had a variety of different stressors that together trigger the development of fibromyalgia.”

How Bad Are the Symptoms?

Some people with fibromyalgia experience severe pain. According to Dr. Clauw, studies that have looked at pain in different rheumatic diseases show that “the average pain level and functional disability of a fibromyalgia patient will be greater than in any of the autoimmune diseases like rheumatoid arthritis or lupus in many cases.”

“Because the pain is widespread, it’s often more disabling than pain that’s just in one or two areas of the body,” he notes.

The pain can come and go and move around the body. And often, it’s just the tip of the iceberg. “We know that above and beyond the pain, the fatigue, the sleep problems, the memory problems are just as bothersome to a lot of the patients,” says Dr. Clauw.

How Is Fibromyalgia Treated?

There are several classes of drugs used to treat the condition, but none is a magic bullet. “There’s a lot of drugs that can be helpful in fibromyalgia, but none of them work well in everyone, and none of them work well in more than a third of the patients we give them to,” says Dr. Clauw.

But when they do work, “They can be very helpful. In almost everyone with fibromyalgia we find one or more drugs that help relieve the pain a little or help people sleep better or help with the mood problems or help with any number of other things,” he says.

Finding a medication that works may involve a lot of trial and error. Dr. Clauw’s advice: “Try different classes of drugs, start at really low dose, go up very slowly, and be patient.” He adds, “There are seven or eight different classes of drugs that can be helpful in people with fibromyalgia. People often have to try one or two drugs in each of those classes and see over time which drugs are most helpful.”

(One class of drugs people shouldn’t be using is opioids, according to Dr. Clauw as well as guidelines from the European League Against Rheumatism. The American College of Rheumatology also strongly recommends against opioid medications.)

Treatment shouldn’t rely on drugs alone. “The best management is some combination of drug and nondrug therapies,” says Dr. Clauw.

In fact, exercise – including aerobic exercise, strength training and aquatic exercise – is currently considered one of the most effective treatment approaches. Although it may be hard to exercise when you’re tired and achy, it can bring some relief. Experts recommend “starting low and going slow.”

For people in too much pain to exercise, physical therapy might be a good place to start.

Other therapies that may offer benefits include the mind-body exercises yoga and tai chi as well as cognitive behavioral therapy, for which Dr. Clauw says the evidence is “increasing rapidly.”

What the Future Holds

Research into the causes of fibromyalgia and better ways to diagnose and treat it are ongoing.

One recent diagnostic advance: In 2016 researchers at University of Colorado discovered a fibromyalgia “brain signature” in the form of neurological patterns revealed during functional MRI (fMRI) scans. These patterns identified fibromyalgia with 93 percent accuracy in one study. The finding could potentially help doctors more definitively diagnose fibromyalgia and provide insight into which treatments to try.

“The set of tools may be helpful to identify patient subtypes, which may be important for adjusting treatment selection on an individualized basis,” says lead author Marina López-Solà, PhD.

New treatments also may be in the foreseeable future. Jarred Younger, PhD, director of the University of Alabama at Birmingham Neuroinflammation, Pain and Fatigue Lab, notes, “There have been several intriguing findings made in the past year. Many of those involve novel diagnostic tools or treatments for fibromyalgia. None of them undergone the rigorous testing in large numbers of patients that is needed for full acceptance. But, if the preliminary results are true, then there will be some exiting new advances coming soon.”

Chronic pain is a tough nut to crack, but progress is being made, and increasing awareness of fibromyalgia – which Lady Gaga is doing by going public with her own struggles with the condition – can only help.

Says Dr. Clauw, “I’m happy that she has come forward as much as she has already and that people are starting to talk about it and write about it, because it will almost certainly help those people who aren’t Lady Gaga who are presenting for medical attention. Every little bit of positive publicity that this is a real disease helps.”

Author: Marianne Wait for the Arthritis Foundation

Related Resources:

  • About Fibromyalgia
  • Fibromyalgia Fixes: Treatments Worth Trying
  • Fibromyalgia Flares: Symptoms, Triggers and Treatment
  • Fibromyalgia and Nutrition

Lady Gaga on her fight with fibromyalgia: ‘Chronic pain is no joke’

Lady Gaga is tired of people thinking the chronic pain she experiences isn’t real.

In the October issue of Vogue, the 32-year-old pop star opened up about her struggle with fibromyalgia, a condition that affects the nervous system and causes pain throughout the body.

“I get so irritated with people who don’t believe fibromyalgia is real,” the singer said. “For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”

READ MORE: Jim Carrey educates Americans on Canadian health care in ‘Real Time’ rant

“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”

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Gaga, born Stefani Germanotta, revealed she suffers from the debilitating condition last September, just before the release of her documentary Gaga: Five Foot Two.

“I wish to help raise awareness & connect people who have it,” she tweeted.

In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it.

— Lady Gaga (@ladygaga) September 12, 2017

For Gaga, the pain has been so bad at times that she’s been unable to perform. In September 2017 she was hospitalized due to “severe pain” and cancelled her upcoming concerts.

There’s a lot of misunderstanding around fibromyalgia, because up until recently, the condition wasn’t widely accepted as a real illness, said Dr. Mary-Ann Fitzcharles, an associate professor of medicine in the Division of Rheumatology at McGill University.

Many believed that symptoms of fibromyalgia were all “in the head” of people dealing with the illness, since they often look healthy otherwise.

“It is now a completely recognized condition, no question,” Fitzcharles said. “We’ve moved away from the notion that all patients have mental illness.”

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What is fibromyalgia?

Fibromyalgia is a condition in which people feel chronic pain in their muscles and tendons, often along with other symptoms like sleep problems, headaches or mood disorders, Fitzcharles told Global News.

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According to the Arthritis Society of Canada, fibromyalgia affects around two per cent of Canadians, although the majority of sufferers (80 to 90 per cent) are women. People between the ages of 20 and 50 are most at risk for developing the condition, the Arthritis Society reports.

There is currently no cure for fibromyalgia, but symptoms can be managed through treatment.

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What does fibromyalgia feel like?

Symptoms of fibromyalgia vary, but include fatigue, disrupted sleep, cognitive dysfunction, irritable bowel syndrome, mood disorders like anxiety and depression, and migraines. There’s one common thread: pain.

“For more than 30 per cent of people with fibromyalgia, even just a gentle touch and stroking the skin is perceived as being unpleasant,” Fitzcharles said.

She further explained that for people with fibromyalgia, their painful symptoms indicate that there’s a disconnect between their bodies and nervous systems.

“It’s as if the nervous system is fired up. In many patients, we see evidence of something we call hypervigilance,” she said. “So people are overly sensitive to loud noises, busy environments and intensive light.”

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What causes fibromyalgia?

Medical experts are unsure of the exact cause of fibromyalgia, but the illness can often be traced back to a traumatic event, Fitzcharles said.

Story continues below advertisement “One third of people will say they were in completely perfect physical health, and then there was some event,” Fitzcharles said. “It might have been a severe viral illness, a traumatic event, like a motor vehicle accident and broken bone, a severely stressful physiological event that seems to trigger the onset.”

For the other two-thirds of people living with fibromyalgia, Fitzcharles says the condition seems to come out of the blue. There is an increased chance of developing the condition if your family has a history of fibromyalgia.

Why is fibromyalgia hard to diagnose?

Fibromyalgia has puzzled doctors for years. It’s is hard to diagnose because there is no one standardized test for the condition, and there’s also no test to confirm the diagnosis. Plus, people’s symptoms can change frequently and again, those living with fibromyalgia often look healthy.

“The patient looks absolutely normal. There’s no swelling, there’s no fever, there’s nothing to see. So even family and friends have difficulty understanding the process,” Fitzcharles said.

Because it’s hard to identify, she says it typically takes patients five years before they’re properly diagnosed.

“What physicians need to do is take a good history from the patient, and examine the patient to make sure that one of the conditions that can as fibromyalgia is not present,” she said.

Then, doctors will do minimal testing to ensure there’s no other underlying illness. “We really recommend against doing excessive testing on patients, like excessive x-rays and MRIs.”

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How do you treat fibromyalgia?

Fitzcharles says that the condition can be treated with drugs, but most patients control their illness with self-managed techniques, including a healthy lifestyle, proper sleep, and minimizing stress.

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“Probably the intervention that is most successful is a regular program of comfortable physical activity,” Fitzcharles said. “Non-pharmacologic management is exceedingly important.”

If a patient does require medication, Fitzcharles said it’s important to find drugs that help alleviate pain — not contribute to it.

“Unfortunately, most of the medication we use has considerable side effects, and many of the side effects can be similar to the symptoms of fibromyalgia,” she said. “So if a patient says they have terrible difficulty with sleep and pain, if we can choose a medication that can impact sleep and pain, that’s the way we go.” © 2018 Global News, a division of Corus Entertainment Inc.

Lady Gaga Opens Up About Suffering from Rheumatoid Arthritis

Lady Gaga, Super Bowl queen and conqueror of body-shaming Twitter trolls, has been open about her health struggles in the past. Back in November, she Instagramed about infrared saunas, a pain relief method she swears by, but she didn’t get too specific about exactly what was behind the chronic pain she was dealing with. A few years ago, she even shared that she had to take a hiatus from performing due to a hip injury, according to an interview she did with Women’s Wear Daily.

Now, the star is revealing for the first time in an interview with Arthritis magazine that the source of her health woes is actually rheumatoid arthritis (RA). Though the full article does not appear online, the cover quotes her as saying: “Hip pain can’t stop me!” and “I fought RA pain with my passion.” Inspiring, right?

If you’re not familiar, RA disease causes your immune system to attack your own body’s tissue, according to the Mayo Clinic. As of now, it looks like genetics may play a role in some cases, but beyond that, the specific causes of RA are not known. The Centers for Disease Control (CDC) also notes that new cases of the disease are two to three times more prevalent in women than in men, making it especially important for women to be aware of the disease and its signs. (FYI, here’s why autoimmune diseases are on the rise.)

The symptoms of RA and other autoimmune diseases can be tough to spot, so it’s important to be informed. When they start to feel sick, “people think they ate something wrong or they have a virus or they’re exercising too hard,” rheumatologist Scott Baumgartner, M.D., an assistant clinical professor of medicine at the University of Washington in Spokane, told us in The Symptoms You Should Never Ignore. For RA, the main thing to watch out for is stiffness and soreness in more than one joint, especially both hands and feet when you first wake up and at night.

Since aren’t that many celebs who have spoken out about autoimmune illnesses, aside from Selena Gomez, who has talked about her experience with lupus, Gaga’s fans who are also dealing with this group of diseases are understandably psyched that she’s shedding light on it. One tweeted, “Thank you so much for telling your story. I have osteo and psoriasiatic arthritis. You are a true angel!”

It seems like we can always count on Gaga to speak up about the things that matter to her the most-including her health-which is one of the many reasons we love her. (P.S. Remember that time she shut down Piers Morgan mansplaining about rape? Yeah, that was pretty awesome, too.)

While fessing up to all her bad health habits to the U.K.’s Times Online, Lady Gaga also revealed that she might have lupus, an autoimmune disease that causes the immune system to attack the body instead of protecting it. The singer’s aunt died of the disease in 1976, and LG has been tested for the disease. She was initially tight-lipped about her results, but later admitted to Larry King that she tested borderline positive for lupus. While she is still healthy and has not experienced symptoms of the disease, getting tested was a healthy move.

Why? Because if a close relative has an autoimmune disease, you’re more likely to develop one yourself. The fact that Lady Gaga’s aunt had lupus puts her at greater risk of developing it as well as a host of other autoimmune disorders such as type 1 diabetes, celiac and multiple sclerosis. Autoimmune diseases affect 30 million women—three times more than men—and diagnoses are on the rise. Luckily, new research is finding better treatments and early detection can help head off some of the worst symptoms before they appear.

Are you at risk? Check out the warning signs to watch for. And read how one woman’s battle with lupus almost cost her her life and that of her unborn son.

8 Celebrities Who Have Battled Lupus

  • 1

    Lupus is a hard-to-diagnose autoimmune disease that can affect many different parts of the body. The symptoms—such as joint pain, fatigue and skin lesions—come and go, and range from mild to life-threatening. A lupus diagnosis can strike anyone, including these well-known names.

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  • 2

    In late 2015, the pop star told the world her absence from public view was not due to a stint in rehab, but to receive treatment for lupus. The disease often strikes young women of childbearing age, and can make you exhausted, cause joint and muscle pain, and affect the heart or kidneys. Gomez continues to undergo treatment, but canceled her 2016 world tour to deal with the depression and anxiety, both of which are common in people with lupus.

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  • 3

    The velvet-toned singer has spoken candidly about the form of lupus he developed when he was a teen, called discoid lupus, which caused the scars on his face. Discoid lupus, named after the shape of the lesions, causes severe inflammation, particularly in areas that are exposed to the sun. It can also cause hair loss. Though Seal says he has been in remission for years, he still works to support lupus research and awareness, performing at various fundraising events.

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  • 4

    Everyone’s favorite Martian, actor Ray Walston, died from lupus on New Year’s Day 2001, six years after being diagnosed with the disease. He was 86. Because lupus is a difficult disease to diagnose, he may have had it for years without knowing it. Although Walston was best known for the ’60s sitcom “My Favorite Martian,” he was also a Tony-winning Broadway star and won two Emmys for his work on the CBS show “Picket Fences.”

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  • 5

    Dancer, choreographer, singer and reality competition show judge Paula Abdul has been one of the most active celebrities in the lupus community. Abdul credits her doctor with keeping her disease manageable but has also talked about living with pain. The joint and muscle aches of lupus can be confused with or accompanied by rheumatoid arthritis. With almost 2.5 million Twitter followers, Abdul has used social media to spread the word about lupus and is often found on the red carpet at lupus events.

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  • 6

    Women are much more likely than men to develop lupus, accounting for 90% of the cases. Women of color are the most likely group of all to have the disease, and performer and TV star Toni Braxton was diagnosed in 2008. She has spoken often about her condition and the deep fatigue that comes with it. Despite the challenges, she has become an activist, helping coordinate an effort called the “Hollywood Bag Ladies Luncheon” which auctions handbags to raise money for lupus research and awareness.

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  • 7

    Entertainer Nick Cannon was hospitalized with kidney failure in early 2012, and shortly thereafter, he was back in the hospital for blood clots in his lungs. That spring, Cannon announced he had lupus nephritis, an inflammation of the kidneys associated with systemic lupus. He created the YouTube series “NCredible Health Hustle,” which documented his own experience with the disease. He maintains a busy schedule but lives a healthy lifestyle, he says, to minimize the flare-ups that often come with lupus.

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  • 8

    No two cases of lupus are the same, with a broad range of signs and symptoms. In 2010, Lady Gaga had heart palpitations and trouble breathing, which led her to seek medical help. Eventually, she was told that she was “borderline positive” for lupus. Gaga has an aunt who had lupus and died young. However, it’s unclear what role genetics play in the disease. Gaga says she currently does not have symptoms but takes very good care of herself, which is strongly recommended by medical experts for managing lupus.

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  • 9

    Charles Kuralt was a popular TV newscaster, beloved by many people for his “On the Road” stories about his travels along the byways of America. He was the recipient of the prestigious Peabody Award and won 10 Emmys. When he retired from CBS News in 1995, it took many people by surprise. Two years later, at the age of 62, he died from complications of systemic lupus. Though there has been a slight uptick in lupus-related fatalities in the past two decades, it is not generally a fatal disease, and most people with lupus live a normal lifespan.

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9 Celebrities with Lupus

Lupus defined

Lupus is an autoimmune disease that causes inflammation in various organs. Symptoms can range from mild to severe to even nonexistent depending on the individual. Common early symptoms include:

  • fatigue
  • fever
  • joint stiffness
  • skin rashes
  • thinking and memory problems
  • hair loss

Other more serious symptoms can include:

  • gastrointestinal problems
  • pulmonary issues
  • kidney inflammation
  • thyroid problems
  • osteoporosis
  • anemia
  • seizures

According to The Johns Hopkins Lupus Center, around 1 in 2,000 people in the United States have lupus, and 9 out of 10 diagnoses occur in women. Early symptoms can occur in the teenage years and extends to adults in their 30s.

Although there is no cure for lupus, many people with lupus live relatively healthy and even extraordinary lives. Here is a list of nine famous examples:

1. Selena Gomez

Selena Gomez, American actress and pop singer, recently revealed her diagnosis of lupus in an Instagram post that documented the kidney transplant she needed due to this disease.

During flare-ups of lupus, Selena has had to cancel tours, go on chemotherapy, and take significant time off from her career to get well again. When she is well, she considers herself very healthy.

2. Lady Gaga

Although having never shown symptoms, this American singer, songwriter, and actress tested borderline positive for lupus in 2010.

“So as of right now,” she concluded in an interview with Larry King, “I do not have it. But I have to take good care of myself.”

She went on to note that her aunt died of lupus. Although there’s a higher risk for developing the disease when a relative has it, it’s still possible for the disease to lie dormant for many, many years — possibly the length of a person’s lifetime.

Lady Gaga continues to focus public attention on lupus as an acknowledged health condition.

3. Toni Braxton

This Grammy Award–winning singer has openly struggled with lupus since 2011.

“Some days I can’t balance it all,” she said in an interview with Huffpost Live in 2015. “I just have to lay in bed. Pretty much when you have lupus you feel like you have the flu every day. But some days you get through it. But for me, if I’m not feeling well, I tend to tell my kids, ‘Oh mommy’s just going to relax in bed today.’ I kind of take it easy.”

Despite her multiple hospital stays and dedicated days to resting, Braxton said she’s still never let her symptoms force her to cancel a show.

“Even if I can’t perform, I still figure it out. Sometimes I look back that evening I go, ‘How did I get through that?’”

In 2013, Braxton appeared on the Dr. Oz show to discuss living with lupus. She continues to be monitored regularly while still recording and performing music.

4. Nick Cannon

Diagnosed in 2012, Nick Cannon, a multitalented American rapper, actor, comedian, director, screenwriter, producer, and entrepreneur, first experienced severe symptoms of lupus, including kidney failure and blood clots in his lung.

“It was super scary just because you don’t know… you’ve never heard of ,” he said in an interview with HuffPost Live in 2016. “I knew nothing about it until I was diagnosed.… But to me, I’m healthier now than I’ve ever been before.”

Cannon stresses how important diet and taking other precautionary measures are to be able to forestall flare-ups. He believes that once you recognize that lupus is a livable condition, it’s then possible to overcome it with certain lifestyle changes and maintaining a strong support system.

5. Seal

This award-winning English singer/songwriter first showed signs of a specific type of lupus called discoid lupus erythematous at age 23 with the emergence of facial scarring.

Although he’s not as outspoken about lupus as other celebrities living with the disease, Seal often talks about his art and music as a means through which to channel pain and suffering.

“I believe that in all forms of art there has to have been some initial adversity: that is what makes art, as far as I’m concerned,” he told an interviewer at The New York Times in 1996. “And it’s not something you outlive: once you experience it, it’s always with you.”

6. Kristen Johnston

Diagnosed at age 46 with lupus myelitis, a rare form of lupus affecting the spinal cord, this comedic actress first showed signs of lupus when struggling to climb a flight of stairs. After 17 different doctors’ visits and months of painful tests, Johnson’s final diagnosis allowed her to receive treatment with chemotherapy and steroids, and she achieved remission six months later.

“Every single day is a gift, and I don’t take one second of it for granted,” she said in an interview with People in 2014.

Johnston now practices sobriety after many years battling alcohol abuse and drug addiction.

“Everything was always masked by drugs and alcohol, so to go through this terrible experience it’s — I don’t know, I’m just a really happy human being. I’m just very grateful, very grateful.”

In 2014 Johnston also attended the 14th Annual Lupus LA Orange Ball in Beverly Hills, California, and has since continued to speak publically about the severity of her disease.

7. Trick Daddy

Trick Daddy, an American rapper, actor, and producer, was diagnosed years ago with discoid lupus, although he no longer takes Western medicine to treat it.

“I stopped taking any medicine that they was giving me because for every medicine they gave me, I had to take a test or another medicine every 30 days or so to make sure that medicine wasn’t causing side effects — dealing with kidney or liver failure… I just said all together I ain’t taking no medicine,” he said in an interview with Vlad TV in 2009.

Trick Daddy told the interviewer he believes that many lupus treatments are Ponzi schemes, and that instead he continues to practice his “ghetto diet,” and that he feels wonderful, having had no recent complications.

8. Shannon Boxx

This Gold-medal-winning American Olympic soccer player was diagnosed in 2007 at age 30 while playing for the U.S. National Team. During this time, she began showing repeated symptoms of fatigue, joint pain, and muscle soreness. She announced her diagnosis publically in 2012 and began working with the Lupus Foundation of America to spread awareness of the disease.

Before finding the right medication to tame her symptoms, Boxx told an interviewer at CNN in 2012 that she would “will herself” through her training sessions and later collapse on the couch for the remainder of the day. The medicine she currently takes helps to control the number of potential flare-ups, as well as the amount of inflammation in her body.

Her advice to others living with lupus:

“I believe it’s very important to have a support system — friends, family, the Lupus Foundation, and the Sjögren’s Foundation — that understands what you are going through. I think it’s important that you have someone who understands that you can feel good a majority of the time, but are there for you when a flare-up happens. I also believe it’s important to stay active, whatever level of activity feels comfortable to you. I hope this is where I have inspired people. I haven’t let this disease stop me from doing the sport that I love.”

9. Maurissa Tancharoen

Diagnosed with lupus at a very early age, Maurissa Tancharoen, American television producer/writer, actress, singer, dancer, and lyricist, experiences chronic severe flare-ups that attack her kidneys and lungs, and also inflame her central nervous system.

In 2015, wanting to have a baby, she worked closely with her rheumatologist on a plan to attempt to have a child after two years of maintaining her lupus in a controlled state. After multiple scares and a long hospital stay during her pregnancy to keep her kidneys functioning properly, she gave birth early to a “little miracle” named Benny Sue.

“And now as a mom, a working mom,” she told an interviewer at the Lupus Foundation of America in 2016, an organization she and her husband strongly support, “it’s even harder because I could care less about myself. But if I’m not healthy, I’m not my best self for my daughter. I’m not going to miss some incredible milestone by resting for a half hour. That’s something I have to do for her and my husband.”

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