Patricia Nell Warren

The Questions About Michael Jackson and Lupus

Filed By Patricia Nell Warren | July 10, 2009 9:30 AM | comments

Filed in: Entertainment, Entertainment, Living, Marriage Equality
Tags: addiction and recovery, lupus, Michael Jackson, painkillers, police investigation, prescription drugs

The news media are mentioning lupus in an update on Jackson's medical investigation. It came in connection with information from an unnamed source, that Jackson's body was found to be in poor condition -- emaciated, no hair on his scalp, needle tracks on his arms. That same day, Larry King discussed Jackson's lupus with Dr. Arnold Klein, the star's dermatologist for over 20 years. Klein first saw Jackson as a patient around 1986. He said he immediately diagnosed the lupus from a telltale butterfly rash on the face, plus crusts developing on the scalp. These latter were getting in the way of plastic surgeons' efforts to heal scalp injuries that Jackson suffered after his hair was set on fire by stage pyrotechnics in 1984.

Indeed, over the years, media from Vanity Fair to Wikipedia have mentioned Jackson's lupus. The diagnosis was not exactly a secret. But it was usually mentioned in passing, as if it was no big deal. And the public has paid little attention to it -- to what was really the entertainer's desperate and courageous battle with a disfiguring disease complex that had a massive impact on his image and his career. Indeed, MJ himself didn't want it talked about, and managed to hide it in plain sight of the whole world.

Now that Jackson is dead, I'm amazed that reporters aren't delving into this part of the story more deeply yet. There was a brief story about it on Huffington Post. But nothing yet that follows what may be the painful thread through his whole career. Especially since the disease's most common symptom is said to be pain -- so it may be linked to Jackson's addiction to painkillers. There's even a possibility that it contributed to the heart failure that killed him.

My one personal connection with lupus has got me wondering about the questions.

Is lupus a serious disease? Yes. It has been known to medicine since ancient times, and used to be viewed with a shudder as one of the "great dreaded diseases." Often it was fatal. Today its mortality rate is down. Those who have it, and treat it, are distancing it from that "dreaded" old label, because of better treatment and more understanding. Yet there's still no cure for this chronic autoimmune disease.

Unlike AIDS, which results from the immune system being weakened, lupus is the result of an over-active immune system. Science doesn't yet know what causes lupus, though it may be triggered by genetic and environmental factors that interact. It attacks and inflames the skin, or (in its more systemic form) the joints, muscles, lungs, heart, kidneys and central nervous system. When lupus attacks and inflames the heart, it causes myocardia...which can result in heart failure.

Yet it would seem that Michael's lupus has prompted more of that rushing to judgment that we've seen directed at the singer's life. Many Americans were ready to brush aside his acquittal of criminal charges in 2005 so they could go on believing that he was a "proven pedophile." Others (including Bill O'Reilly) were ready to believe that he was bleaching his skin in order to deny his racial identity as an African American. Still others have evidently brushed off the mention of lupus, so they can look at Jackson as just another of those show-biz addicts who get hooked on prescription drugs.

But I'm thinking about the weighty word "lupus" and wondering how deeply this disease will alter his biography if it turns out to have been a major factor in his death.

My Friend Rose, and Her Lupus

I've had an interest in lupus since a Florida friend of mine, Rose Bass, was diagnosed with systemic lupus erythematosus in the 1970s. This was at a time when the disease was still little understood and often fatal. She had to give up a promising career as a CPA. Fortunately, her parents became lifelong caregivers as she became more disabled and shut-in. It took her around 25 years to die, and she experienced excruciating pain. Towards the end of her life, Rose got involved with other lupus activists who were trying to raise a most positive public consciousness about the disease. Her framed picture sits on my shelf as I write this.

Some time ago, I ran across some new research about lupus. According to a New England Journal of Medicine article in 2007, an international group has discovered a gene, NALP1, that possibly links lupus with another autoimmune condition that Jackson had, namely vitiligo, which attacks the pigment in skin and turns it white in patches.

Today lupus is viewed as controllable and treatable to some degree, depending on the form it takes and how severe it is. It can go into remission, then suddenly flare again. Its onset can be triggered by stress, infections, illness, trauma, certain medications, even exposure to sunlight.

Here is the Lupus Foundation of America's description of the form that Jackson may have had -- namely the one that attacks the skin, cutaneous lupus erythematosus:

"Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus."

The LFA adds: " Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom."

From Stress to Stress

Arround 1986, when Jackson was 28, he was first diagnosed with lupus by Dr. Klein. At the same time, Klein diagnosed the singer's case of vitiligo.

In his King interview last night, Klein commented that lupus and vitiligo often occur together, and shared details on the treatment. He said that he and Jackson opted for use of chemical creams that gradually lightened the areas of normally pigmented skin. Their aim was to match the areas progressively whitened by the disease. The only other option was wearing dense makeup over the light areas, an approach that Klein said would have been unworkable -- too patently visible -- for the off-stage part of Jackson's life.

Since Jackson had already had a lot of plastic surgery by then, both on his scalp and his nose, pain and pain management was already an issue. Klein mentioned that Jackson was very sensitive to pain.

Some media sources assert that Jackson mentioned both diseases during his famous Oprah interview in 1993. However, in the interview footage I've found, he told Oprah that his medical issues were "private." He did mention that he had a "skin disorder" he "couldn't do anything about," because it "came from his father's side of the family." In his King interview, Dr. Klein confirmed that a male relative on Jackson's family had this disorder. It could have been vitiligo, or lupus, or both -- since they may be genetically linked. In other words, cutaneous lupus could be what Jackson had suffered all along -- ever since his teen years, when he had developed a bad case of what looked like acne, that his father and brothers teased him about.

In other words, cutaneous lupus could have been touched off by all the stress and emotional trauma of those teen years, when he was dealing with abuses by his father.

Some media sources state that Jackson's lupus went into remission. However, the medical literature tells us that lupus remissions can end with frightening suddenness. The 12 years between 1993 and 2005 were highly stressful. During that stressful period, autoimmune disease may have been gone active in his system again. There was the two episodes of being tried for child molestation, the 2005 trial and acquittal, his marriages and divorces, custody fights over children, plus the pile-up of his colossal debts, and the apparent collapse of his career.

After hiding out in Bahrein for a while, Jackson quietly returned to the U.S., and took up an isolated hidden life in Las Vegas, where even his family reportedly couldn't see him. According to information cited by CNN, the rare glimpses of Jackson showed him looking thin, disheveled and unwell.

Is it possible that, in his final years and months, as a result of all the sustained stress, Jackson became one of that 10 percent who progress into a more systemic form of lupus? Did he experience increasing joint and muscle pain because of it, prompting more desperation around painkillers?

Some media sources insist that, about this time, the Jackson family went to Las Vegas and tried to do an intervention on what was said to be his growing addiction to prescription drugs, but they were rebuffed by him. In 2007 his mother and most of his siblings issued a statement denying that they had done any such intervention.

Last night, on "Larry King Live," Dr. Klein's version of the story was that Jackson went quietly to Europe on his own personal intervention, and there he put himself into rehab for a while.

Whatever the truth about how Jackson dealt with his addiction, it does appear that recently he was pulling himself together, getting his life back on track and planning his "This Is It" comeback.

Klein said he saw Jackson days before his death, during the rehearsals at Staples Center. According to Klein, the singer looked fit and happy. "He was dancing for my patients," Klein said.

Asked about the needle tracks by King, Klein said he didn't see any, but added that he hadn't looked for them. He also couldn't account for the "emaciated" look of the body being alleged by the unnamed source, and pointed out that dancers always try hard to stay thin.

If in fact Jackson was developing a more systemic lupus, it may explain the chronic back pain that he complained about. It may explain his occasional appearances in a wheelchair. Lupus symptoms may also explain his loss of weight, and loss of all his hair. Not to mention that it could have affected his heart. In combination with the effects of powerful prescription drugs, lupus-induced myocardia might have contributed to the heart failure that killed him.

Questions for the Future

Sometime in the coming months, when the final autopsy report is in, and authorities have dug through the hidden facts of Jackson's medical condition to the very bottom -- and/or perhaps when someone finally writes a definitive biography of MJ -- we may finally learn more of the truth about this medical side of his life, and that secret battle to protect his looks and his livelihood.

Why did Jackson chose to hide the fact of his disease, and his treatment? Likely he didn't want his image associated with a "dreaded disease" that might make his fans say eoowwww. Hollywood in the 1980s was already consumed with hiding cases of AIDS among stars, producers, writers, directors. Jackson always described himself as a perfectionist, so surely his skin conditions were "imperfections" that were profoundly upsetting to him as a performance artist who was bent on creating a unique brand based on personal appearance. They put a whole new twist on his song "Man in the Mirror." He told Oprah that he didn't look at himself in the mirror very often. Apparently he didn't want his fans to look at him that way either.

Unfortunately, by hiding these medical facts (which was his right, after all), Jackson touched off three decades of wild and often unkind allegations that he was bleaching his skin because he "didn't want to be black." Even after his death, these allegations are still being made, notably by Bill O'Reilly, who ignores all the medical evidence and asserts that Jackson isn't a black icon because he lightened his skin. Fortunately most people in the black community understood that Jackson did have vitiligo...notably all the other black icons who turned out to celebrate him after his death.

In MSNBC and People interviews shortly after Jackson's death, Dr. Deepak Chopra (a therapist and friend of Jackson's for many years) was another witness who talked about Jackson's lupus and vitiligo. In his chat with Keith Olbermann on MSNBC, Chopra talked bluntly about his long-time concerns over Jackson's growing addition to painkillers and other prescription drugs. He blames Jackson's death on the out-of-control use of prescription drugs and is calling for an all-out investigation of these practices in the entertainment industry.

Law enforcement is now interviewing all of Jackson's doctors -- including, apparently, Dr. Klein. Whether or not any of them administered those drugs that killed him -- whether or not any of them broke the law, or whether they violated good medical practice when they treated him -- is another story.

If the autopsy report pinpoints that illegally administered prescription drugs were the cause of death, somebody will probably be going to prison.

But drug addiction doesn't answer all those questions about Jackson's life. If advancing lupus was part of that vast shadow that fell across his later life, then how did he manage to perform so brilliantly during that last 90-minute rehearsal at Staples Center? As he laughed and joked with the other dancers, there was his apparent ease of movement, his casual crispness with a lot of the old moves, his expression of enjoying himself. All that may have been made possible because he had enough painkillers in his system to numb an elephant.

But that 90-minute victory also tells us volumes about the power of his will to make his dancing feet obey -- to make a comeback against all odds -- to return to the stage that (as he told Oprah) was the only place on Earth where he felt "at home."

As for the 50 London performances that were lined up, we can only guess at how Jackson thought he would get through them, given the colossal amount of drugs he would have needed to deliver for his fans every single time.

One final question: since Jackson knew that his disease might be inherited, did he worry about passing it on to his offspring?

Today, with all the questions raging about who was the real biological father of his three children, is it possible that there's a medical reason for why this question might be asked? Did Jackson arrange for at least one anonymous sperm donor so his sons and daughter would never develop lupus -- so they would never live in the hell of pain that he had known?


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In a world completely obsessed and oversaturated with Michael Jackson, where cable news networks cover NOTHING ELSE, and 100% of it pure twaddle, I come to the Bilerico Project (pissed off about an incident in an El Paso restaurant) and find the most interesting, insightful and readable article on the subject.

KUDOS!

jodi johnston | July 10, 2009 11:50 AM

I would personally like to thank you for your unbiased reporting on the fact that Michael Jackson had Lupus. Let me assure you, being infamous and a Lupus sufferer, is very painful for me, not just on a physical, but an emotional level, because it is so misunderstood by everyone. I could not imagine being in the public spotlight trying to get others to understand what it is I am going through. How do we explain the pain that no one can see? Pain that causes even family members to doubt our sometimes disabling illness. Anyone who would be open minded to the facts regarding Lupus could then surely not deny that some of Micahel Jackson's so called stange behaviors fit exactly what lupus sufferers must do in order to avoid a flare of their condition. Unfortunately, too many appoint themselves judge and jury. We would NEVER do this to someone diagnosed with cancer. The stigma surrounding this illness must come to an end and the truth about Lupus must be brought into the spotlight. Maybe when this occurs, those suffering with this illness will have the courage to come forward without fear of persecution. This is truly an isolating illness and no one should ever have to suffer so much alone.

Adriana Rodriguez-Cortes | July 15, 2009 11:15 PM

After experiencing deteriorating health for almost 2 years, many doctors visits and excruciating pain I found that I have Lupus. I appreciate this article and wish there was more information out there about Lupus. We must create awareness and respect for the disease. I can only imagine what Michael Jackson lived thru just to get by day by day. Let's work hard to create awareness! God Bles you. Thanks for sharing. Adriana

Jodi, I greatly appreciate your comment, and your sharing of personal experience with lupus, especially the pain, and agree with you about the stigma that still must be battled. I wish you well in your ongoing daily struggle with the symptoms. Take care.

Auto-Immune Diseases and Michael Jackson.

It shows in pictorial form what his medics have testified that he had, and what he quietly revealed in a number of interviews over more than 20 years. He made no secret about it.

But you see... it doesn't fit the image, so wasn't publicised.

Wow, PNW, thanks for this. I don't know how I could have not known about his lupus all these years. It rather explains everything.
A lesbian Catholic writer whom I deeply admire, Flannery O'Connor had lupus and the condition, as it manifested itself in her life, is well documented in Brad Gooch's bio of her. An excellent bio, incidentally.

This was a very interesting read, but it still wouldn't make sense to me that Michael would keep the lupus secret while addressing other issues such as the vitiligo, in favor of letting the tabloids and the public say and think anything they wanted. Why, with the truth in hand, would he choose to be vilified in worse ways?

Good question, Bruno. Socially and medically, there is a big difference between vitiligo and lupus. First of all, the patches on Jackson's skin were visible at one point, so he couldn't deny having it. But nobody would have made an issue about Michael having vitiligo, because it's known that African Americans have a higher incidence of it, and because it's not a debilitating or potentially fatal disease.

However, as Jodi Johnston pointed out above, there is an old stigma around lupus that people who have it today are trying to do away with. If a big thing had been made about Jackson having lupus, he might have been facing serious image issues and professional issues. So he and his connections kept the lupus low-key. And probably it was they, at one point, who put out the word that his lupus was in remission.

In the 80's my partners HIV treatments were complicated by lupus. Not being a medical person, I was bewildered and totally useless. Now, 20 years later I still find comfort in every detail. Thank you very much.
RIP
Dale Diggs

I'm so sorry to hear about your partner's painful battle. And the media have done little to educate the public about this disease. Thanks for your comment.

Thank you for your thoughtful, intelligent and unbiased article that clearly answers so many behaviours of Michael that seemed outside of the norm. I too have had to manage a number of non visible health conditions that have impacted on my ability to work with ease in my profession and I have worked hard to find creative ways to address the challenges. Because my energy has being focused on finding creative ways to deal with my health and do my job I have had litlle energy left to explain to suspicious people why I do some of the things 'unusual' things I do. I have also found that when people are feeling suspicious the doubt can often close their minds so when I have tried to explain I have often found myself working harder to engage people and gain their understanding. I saw that hapen to Michael in his interview with Oprah. It is so sad that the human condition is more inclined to doubt and at times become hostile or aggressive towards people who have unseen health conditions. Perhaps we could use Michael's sad circumstancs to reflect upon, and open our minds to practice some of the qualities he so often showed people, such as healthy inquisitiveness and compassion. Thanks for writing the article to remind me of the humaness that comes from empathic listening and understanding.

Cheryl, thanks for your comment, and your willingness to share personal experience on battling and managing a serious chronic disease like this and still keep your profession going. Good luck with that.

Thank you for your thoughtful, intelligent and unbiased article that clearly answers so many behaviours of Michael that seemed outside of the norm. I too have had to manage a number of non visible health conditions that have impacted on my ability to work with ease in my profession and I have worked hard to find creative ways to address the challenges. Because my energy has being focused on finding creative ways to deal with my health and do my job I have had litlle energy left to explain to suspicious people why I do some of the things 'unusual' things I do. I have also found that when people are feeling suspicious the doubt can often close their minds so when I have tried to explain I have often found myself working harder to engage people and gain their understanding. I saw that hapen to Michael in his interview with Oprah. It is so sad that the human condition is more inclined to doubt and at times become hostile or aggressive towards people who have unseen health conditions. Perhaps we could use Michael's sad circumstancs to reflect upon, and open our minds to practice some of the qualities he so often showed people, such as healthy inquisitiveness and compassion. Thanks for writing the article to remind me of the humaness that comes from empathic listening and understanding.

The media didn't want the public to be aware that Michael had Lupus or Vitiligo because both would kill their most popular narrative - that he was getting constant plastic surgery on his face. Now given his aversion to pain and the issues he was dealing with, how likely is it that he was in a plastic surgeon's office getting cut up to modify his face every few months - adding to his pain? The media just had it out for MJ and the public fears anyone who looks different. They'd rather believe that he had body dismorphic disorder and disfugured himself with plastic surgery - somehow people believe you can alter your skin color with plastic surgery if you are rich enough - because then if they are repulsed by his skin being paper white they can revile him openly and mock him for what amounted to a disability.

TERRIANNE MARIE | July 14, 2009 2:34 AM

WHAT AN ANGEL MICHAEL WAS...THANK YOU SO MUCH FOR THIS ARTICLE...MICHAEL WAS NOT A DRUG ADDICT....HE NEEDED DRUGS MUCH THE SAME WAY CANCER PATIENTS NEED AND TAKE MORPHINE...THERE IS NO WAY HE COULD NOT HAVE HAVE PAIN MEDICATION TO PERFORM SO PERFECTLY AND GLIDE THE WAY HE DID...AS HIS BROTHER JERMAINE SAID HE WAS A GIFT TO US....AS WAS MARTIN LUTHER KING....MALCOLM X...JOHN LENNON....A BEAUTIFUL BEAUTIFUL MAN...WHO CHOOSE TO SUFFER SILENTLY AND NOT LOOK FOR PITY.......REST IN PEACE ANGEL MICHAEL AND GOD BLESS YOUR 3 ANGELS BLANKET,PARIS AND PRINCE GOD BLESS THE JACKSON FAMILY

Update on 7/16 -- PopEater has a story today that posits the hair-set-afire episode in 1984 (during a Pepsi commercial shoot) as the beginning of Jackson's woes with pain and painkillers.

Still the press has aired little or no discussion of lupus as a possible major factor in his addiction to painkillers.

Jodi Johnston | July 18, 2009 10:51 AM

Thank you Patricia for your kind words. I just wanted to add that while the press is making a big deal of all of the painkillers removed from Michaels home, there is little or no mention of the prednisone which was also removed. Prednisone is used to treat lupus. Certainly, Michael was not addicted to it, it was there for a reason. A reason which no one seems to want to explore. Some of the other medications can also be helpful in treating lupus such as Xanax. Many lupus sufferers have anxiety and depression, but I guess it is easier for them to believe he took it because of his addiction to drugs and not because it may have been medically necessary. I hope and pray the truth comes out and the vindication he never received in life will be his in death so that he may finally rest in peace.

Thank you for the wonderful and thoughtful article. One of the the things I noticed from pictures of Mr. Jackson from the early 80's was he had a lupus rash on his face. It is very clear evidence that he was a sufferer of lupus. I suffer from an autoimmune disease that is classified as connective tissue disease that is very close to lupus and I for one know that the pain associated with it is something I would never wish on my worst enemy. It's hard for friends and family to understand because to them "you don't look sick". When we get stressed, the immflammation can wreak unbearable havoc on the body that can debilitate us for days on end. It has taken weeks and months to find the right combination of medicines to ease the pain to even allow me to function, notwithstanding the allergic skin reactions. I cannot imagine living my life in the public eye or even being an entertainer who danced and sang for a living and at the same time have this disease. Imagine I had to dance and sing every day for weeks on end, and at the end of the day I would still have to contend with the pain from my disease. It would be hell. So I for one won't throw stones at Mr. Jackson for his course of treatment or how in the face of that pain he chose not to reveal that to others. Sometimes people get the wrong idea when they don't always have all the facts. I would say he handled it with grace. However, I think the trial and the charges of molestation took their toll on him in the pursuing years, and by this point the stress was more than he could handle. The disease by then had probably progressed which does happen. I hope and pray that when all this is said and done, that some truth of what he went through will be made public and he can finally find some peace in death that he could never find in life.

Thanks to all for these amazing comments -- especially to those who have shared their experience with, and knowledge of, this autoimmune disease.

A wonderful and insightful article.Some may question the decision by Michael Jackson to not discuss this particular affliction but when he did try to elaborate on the effect Vitiligo had on him the information was treated as suspect. Many still accused him of self-abasement.Why then try to explain something as complicated and insidious as Lupus? Regardless of his appearance I always respected the level of grace and dignity with which he carried himself and if he did so while suffering and in pain, all the more credit to his spirit as a human. I truly hope the media regains it's sense of integrity and pursues the simple truths rather than the outlandish falsehoods they so passionately embrace.

My heart goes out to Michael Jackson, his children and family. He was such a kind, compassionate individual and the news media seemed unable to believe that Michael's love of children and people was real. It is so sad that so our world could not see the beautiful heart and soul of Michael Jackson and prefered to cast shame and doubt on the kindness and tenderness Michael Jackson ALWAYS expressed and extended to those in need and to those he loved. To be all that Michael Jackson was, is remarkable. To do so while suffering silently is phenomenal. I really cannot find the words to express how much I admire and love the man Michael Jackson was. How sweet a thought to know that he is in heaven and can now find the peace and the love he so deserves. We miss you Michael, but heaven is blessed with your sweet spirit. Dance on......

Hi,
Thank you so much for writing this up. Something I so wanted to say! If you look at his pictures during off the wall, thriller era (from 1979-83), it's so obvious that his skin is no normal. Yes he had plastic surgeries and looked different. But his skin had blemishes (probably because of onset of lupus inflammation). I am sure he wouldn't have tried to make his skin red!!
Late you could progressively see how his skin turned its colour making him look like whiter than most whites.
If he really wanted to be white, he would have stopped after he acquired a good shade of fair skin. But the very thing that his skin turned almost pinkish shows how he had lost all the skin pigments.
But I am proud of him that he managed this far and still was able to make good music, speak good words, raise his kids and keep a happy face. Those who misunderstand him and accuse him of all sorts of things are nothing but superficial ignorant pea brains.

I sure do appreciate this discussion about Michael Jackson and his lupus and all the pain he must have endured.
I have severe lupus and am in very severe pain all the time. I do get pain meds--hydrocodone that helps some. But except for a very few friends I just get viewed as an addict. Education simply hasn't helped. And this gets very discouraging.
Even my doctors failed me. Their focus on the
fact that I was taking 3-4 pain pills a day just to keep going allowed them to totally ignore all the symptoms I was having neurologically. The end result was that they missed a life threatening problem with me. I had a huge brain aneurysm and
had surgery in March. It was only because I got angry and demanded that they listen that they even did an MRI to find out what was wrong.
I am expected to be passive but if I hadn't been
what some perceive as down right aggressive I would be dead. The problem is that I don't think a lot of people would care. And to be honest that
scares me.
I have a feeling that may be what Michael Jackson experienced. I absolutely do not think he
was an addict at all. I know he is resting in peace. I loved his music and dancing and so appreciate him bringing that to the world inspite of how much pain he was in. He has given me hope and I will always appreciate that gift. A gift that is so hard to find sometimes.
Thank you Michael.
joannamarcille-Jo Ann