disfiguring diseases

Case Study: White as New Fallen Snow

 

How Vitiligo and Michael Taught Me Compassion

I am a 52 year old white woman, and when I say white, I mean white like new fallen snow! I have Vitiligo. Vitiligo is a disease that can compromise your immune system and distort your whole appearance.

The summer before I was getting ready for college, I noticed some strange looking chalky patches that suddenly appeared on my hands. I was an olive skinned girl who never worried about sunburn and who tanned every summer to a golden mocha. Of course in those days of the early seventies we were slathering ourselves with baby oil never giving a thought to sunscreen. It never occurred to me to worry about my skin or the sun or my appearance beyond the occasional pimple and getting the latest fad in fashion and makeup.

I thought the spots were from the French fry grease at the fast food restaurant where I worked that summer to save up money for college. I was sure they were small burns from the fryer and would go away when the burns healed. But at college that fall, I noticed the spots not only had not disappeared, but had grown larger while new ones were forming on my elbows. I knew then that they could no longer be ignored.

I had never even heard of the word: “Vitiligo” but after my doctor visit, I soon became intimate with it as it became a huge feature in my world. An autoimmune disorder, I learned that Vitiligo can be genetically passed down in families but not always. My family has no history of Vitiligo. And it was autoimmune- what a heart-stopping betrayal! Everybody wants to be “comfortable in their own skin” but my own skin was damaging itself and damaging me! How can your own skin turn on you?

I began to read everything I could find on the disease. Vitiligo is an antibody that is in your genes when you are born and for some reason it gets stimulated to start destroying your melanoctyes which are the cells in your skin and hair that produce melanin. Melanin is what gives your skin pigment or color. There is lots of research being explored to discover what triggers Vitiligo and what determines how fast it spreads. It may be environmental factors, stress, physical factors like hormones and blood loss or most likely a combination of all of these. The medical community has established that the antibodies in Vitiligo completely destroy the melanocyte.

That means that my body sees my own cells as something foreign that needs to be attacked, destroyed and removed! There are some treatments that may help restore pigment in some cases but those treatments are not a cure. As of now, there is no cure. The treatments are very time consuming and involve taking a drug that can cause liver damage. I tried a few of these therapies early on when my white spots were not so widespread, but it was not very successful. I decided that I would rather have white spots which were not painful or really hurting me in any way, (other than sunburn, and strange glances and remarks from people) than risk damaging my liver and turning yellow from the resulting jaundice! Did I want to turn white or turn yellow? Were those my only choices? Nursing was my college major and that influenced my decision to forego the drugs because I understood, medically, the reality of the side effects. I later tried the depigmentation therapy on my face to bleach out the remaining dark areas but it did not work very well for me. It affects everyone differently and it takes a lot of diligence and repeated treatments.

The National Vitiligo Foundation (NVF) is a lifesaving resource for people afflicted with this disease. They spearhead the research and search for a cure while providing education and resources for sufferers of this disease. Vitiligo is in the same category as other autoimmune disorders like Lupus, Reynaud’s, Diabetes, and some Thyroid disorders. Most people who acquire an autoimmune disorder develop more than one. I recently discovered that my Thyroid is also involved and I have mild Reynaud’s which is a disorder that affects the circulation in extremities like hands and feet. It makes one’s fingers and toes cold and discolored from poor circulation.

I learned at an NVF conference I attended that because melanocytes are completely destroyed by Vitiligo, there is zero chance of getting Melanoma in the areas that are white. Researchers are looking at a possible treatment for Melanoma using antibodies taken from the blood of people with Vitiligo. The thought is that maybe those melanoctye-destroying antibodies might provide a treatment or cure for cancer is a thought I like to hang onto because it would mean that something good could come out of this disorder.

There are emotional valleys for the person adjusting to the diagnosis of Vitiligo. Over time Vitiligo spreads and is not easy to hide in those stages. My face, hands, arms, and legs became covered with white patches and were a source of embarrassment for me. But the day came when I decided that I was not going to wear long sleeves and pants for the rest of my life! I did need to protect my skin however, because the depigmented skin has no protection from the sun. I found out the hard way how badly burned one can get from the sun if not extra careful. I sometimes think I alone keep the sunscreen industry in business. There are days I wish for a vat to dip myself into to decrease the time it takes to apply sunscreen and protect my skin because it’s necessary if I am going to continue the outdoor activities I love and enjoy. The evening is a better time for me to do things when the sun is not so intense and I forego things scheduled for daytime when the sun is bright. It does require lifestyle adjustments.

I often think how fortunate I was that I didn’t have to deal with this during my junior high and high school years. Being a teenager dealing with all of the hormonal changes, peer pressure and confusion is tough enough without harsh comments about one’s strange and changing appearance. I am sure I would have had to endure cutting remarks regarding my strange appearance. I did need to learn to deal with people staring and making comments especially during the summer months when my pigmented skin was darker in color and I was more exposed wearing summer clothes. I have heard some very bizarre, sometimes funny and occasionally hurtful comments.

I don’t think people intend to be mean but are surprised by someone’s (mine) appearance and don’t think before they speak. I imagine that I did look odd with white spots all over my skin. Children wanted to know if I was “like a leopard” or was I “part zebra?” Adults thought I had been burned and would ask “is it painful” or “is it contagious?” I think I actually liked it better when someone would actually speak to me about their curiosity and ask questions rather than just staring or worse yet snickering or whispering to their friends. Explanations had to be necessarily lengthy and that took up my time when I might have preferred to spend it in some other way.

I will never forget one of the saddest encounters I can remember with a woman who was from India who stopped me one day in a parking lot:

“I noticed the patches on your skin. Do you have Vitiligo?”

“Yes, I do. Are you familiar with it?”

“Yes. My sister who lives in India will never be able to marry because she has Vitiligo. There is a taboo surrounding it in that culture and no man would consider marrying a woman with the disease and whose appearance is marred and undesirable. When it comes to women, India places a lot of emphasis on beauty.”

I could not fathom that attitude nor imagine it to be true. I thought about how lucky I was to have met a man who looked at me and loved me without seeing a “spotted person” but saw a human being. Actually, he was more offended by people staring and snickering at me than I was. I was once stopped in a store by a woman who wanted to know how I had gotten such a bad case of poison ivy. I was baffled by that one until she added that she couldn’t believe how much calamine lotion I had on!

There was one incident where I noticed a lady staring at me which happened all the time, but this time she began following me in the grocery store and when it got a little creepy I turned to face her. She remarked that I “must be an amazing volleyball player to have so many brush burns on my knees and elbows from diving for balls.” I had to bite my tongue so I wouldn’t burst out laughing! I always feel bad for most of the people who make comments because they are so embarrassed when I tell them the facts. The most hurtful encounters are with people who don’t take the time to stop and ask but just stare, point or even laugh. There were times I would actually forget that I did look “odd” until I noticed someone staring or pointing and that would launch me right back into feeling self-conscious and awkward.

I realized too, that I was fortunate to be a white person with Vitiligo. I met several black people with Vitiligo at the NVF conferences I attended and learned how much more devastating it is for them. I was a white person who was turning whiter. They were black people who were becoming white. Not only did they have to deal with the physical changes, but they had to deal with feeling a loss of their race and identity. I cannot speak to this but I can certainly empathize with how much more difficult that must be to lose your ethnic roots, identity or race and to not only question your own identity, but have all that questioned by others.

 

The Famous Face of Vitilgo

That brings me to the most famous person to have Vitiligo: Michael Jackson. I was a big Michael fan from his early days with the Jackson Five and all through his solo career. He and I were the same age so I grew up on his music and dancing. I remember hearing for the first time the rumors that he was bleaching himself white; I thought that was crazy. I knew personally how difficult it was to try to use depigmentation as a treatment for Vitiligo so I couldn’t imagine how someone could actually bleach their entire body. I asked my dermatologist at one of my yearly visits in the late eighties if she knew anything about Michael Jackson’s skin color and she told me that it was known by most in the dermatology community that he had Vitiligo.

At first I was excited to think that I shared something in common with Michael Jackson. Then as the reality set in, the more I thought about it, the more I realized how horrible it must have been for him. Not only was he a black man, he was probably the most well known person in the world and someone who performed in front of millions of people. It was easy for me to just ignore the stares and go on with my life but how do you do that when you are in the spotlight all the time and subjected to ridicule and tabloid trash talk? I can understand why he tried to cover his Vitiligo up the best he could with makeup and clothes. Michael was known to be a very private person who didn’t want to divulge his medical condition to the world. I have a feeling he may not have received a lot of support from those around him, his professional contacts, and certainly not from the media. And when he did admit to having Vitiligo, so many hateful people in the media refused to believe it using ridicule and writing he “claims to have a skin condition.” Claims to? They accused him of trying to bleach his skin and become a white person. They called him a traitor to his race thinking he had betrayed the African American community of his roots. Who would chose a disease that betrays your own body, challenges your very identity and continually changes your appearance requiring medical treatment and makeup? How does someone who makes their living with their famous face and who faces a debilitating disease deal with that kind of ridicule and mocking from the press?

There were those in both the black and the white communities who turned against him simply because of his changing appearance. Hurtful words can be more painful than a physical attack. Michael endured far too many hateful, hurtful words. Many in the “media” claim that even with Vitiligo Michael would not have naturally turned so completely white. Well, I can verify that it is very possible. My Vitiligo started with me being mostly tan colored with white patches and spots, and gradually progressed to my appearing mostly white with tan spots to now being almost completely white except for a very few tiny tan spots.

Not only is a morphing appearance unavoidable with Vitiligo, but it is inevitable. Now that the antibodies have finished with my skin, they are starting on my hair. I have huge white patches in my hair, eyebrows and eyelashes. It is a cruel joke that the hair on my legs remains as dark as ever which looks even worse against the stark white skin! I can’t throw out that razor yet. And I now get stares and lots of questions about my hair.

Most people actually think I just have beautiful white skin now. I am sure Michael could have experienced a similar evolution of his appearance. He reportedly used the depigmentation therapy to help even out his skin color so he would not have to wear so much makeup. It is all so easy to understand if people were only not so quick to make hateful judgments or believe everything the tabloid media spews about celebrities.

I wish I could have understood better what Michael Jackson went through while he was still with us. I regret not letting Michael know in some way that I understood at least in part what he went through dealing with this disease. I regret not speaking up more then. I have now become a major defender of Michael Jackson promising myself that I will not let hateful words stand! I think too and I sincerely hope, that I have become more accepting of people’s differences because of my own personal struggles with appearance and acceptance. I try really hard to not make judgments about people without learning more about them. Without the challenge of Vitiligo in my life, and my connection to Michael Jackson I might not have that understanding; I might be a different person. Vitiligo and Michael Jackson taught me about compassion.

 

Discussion Questions

  1. What do you think about people who stare at those who look different? What makes people stare? What causes them to laugh or make fun of someone who looks different?
  2. What causes discomfort? Would you feel comfortable asking questions of someone who looks different? Could you discuss it with them? Would you initiate the conversation?
  3. What causes the sensitivity that makes humans feel shameful, embarrassed or humiliated? Have you ever felt that? What were the circumstances? Did it make you angry? Sad? Hurt? How did you handle your feelings?
  4. What causes us to see someone as “different” and then separate ourselves from them? Do you avoid people who are different? Are you uncomfortable around someone whose appearance is “different” or “abnormal?” Are there things that can be done to practice making ourselves and others comfortable? What are they?
  5. Does a disease like Vitiligo have emotional components? Why or why not? Imagine having a disease that affects your appearance. How would you feel?
  6. How do you feel about ethnicity? Racial pride? Racial prejudice? Is it important to keep and respect one’s heritage?
  7. What do you think causes people to “jump to conclusions” about other people? To label? Discuss labeling and labels.
  8. Have you ever been the target of ridicule? Of public ridicule? How did that affect you? Discuss.
  9. What constitutes a handicap? Are all handicaps obvious or visible? Do you consider yourself handicapped or sensitive to the handicaps of others? Can you imagine having physical or mental limitations? Do you think you are a compassionate person? Why or why not?
  10. What are the consequences of separating ourselves from others? Of making others unacceptable? Does it cause conflict? How and why? Does it cause suffering? Who suffers when intolerance is practiced?
  11. If you were in charge of creating tolerance in today’s world what is the first thing you would do? Could you convince others to join you in that mission? How would you go about it?
  12. Have you ever felt like you should speak out about or against something? Did you voice your opinion? Why or why not? How did that decision affect you? How did it affect others?
  13. How do you feel about blaming people for their own diseases? Would you blame someone for their own cancer? What about diseases which affect appearance like Vitiligo, Acne, or Anorexia? How about disfiguring illnesses that drastically change body or facial appearance? What about diseases that are not so visible like Diabetes? What about hidden diseases like mental illness or drug addiction?
  14. What would it mean if we could create a more humane and compassionate society and world? Could you describe what that world would look like? Can you list the changes you would notice in a world like that? Do this exercise as a brainstorming group.
  15. It has been said that it is important to leave the world a better place than you found it. Discuss what this means. Do you agree? If you agree, then what can you personally do to make it better?

 

Case Study written by: Joyce Frame

Joyce is a retired nurse living in Cincinnati, OH. She spent six years in the Navy after graduating from West Virginia University with her BSN. She now keeps very busy volunteering in many different areas, including feeding her very favorite Penguins every Monday afternoon at the Aquarium. She also works with the Assistance League of Greater Cincinnati to 'provide comfort, offer hope and encourage a feeling of dignity and self worth in adults and children' served through its programs. Joyce makes time to keep up with her love of tennis, reading, listening to music, and working in the yard.

 

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