Category Archives: Dealing with vitiligo

Avoiding pain and having vitiligo

Written by . Posted on January 20, 2012. Filed under Dealing with vitiligo, My Story. 2 Comments.

Who likes pain? Who likes discomfort? Who likes awkwardness? Who likes feeling uncomfortable?

You do.

Well I do. I have learned to love pain and discomfort and awkwardness and the uncomfortable.

Why do I love these feelings? These feelings have brought about the most significant learnings and growth that I am aware of. Last year I started working towards optimal health. I want to be the healthiest person I am able to be. I want to be healthy so that maybe I wont have vitiligo or not be as affected by having this disease vitiligo.

I started an exercise program three times a week. I hike regularly and luckily I am able to hike year round because I live in the San Francisco Bay Area. I have lost weight, gained lean muscle mass and in some areas regrown pigment, specifically on my hands. I have also lost pigment on my legs and a couple spots became evident on my chest for the first time. I feel healthy, I feel fit and now I am doing Bikram Yoga every day.

The pain and discomfort of exercise is paying off for me in the form of a healthier me. Pain and discomfort were required for me to get in shape.

This same pattern is evident in every other area of my life. A willingness to experience discomfort socially, in relationships and in my every day life is required for growth in these areas.

I had an amazing realization not so long ago. I realized I had not thought about having vitiligo in a negative way in several months. I realized that while I was shaving I was not looking at the lack of pigment around my mouth and on my neck. I did not worry about its spread over my face. I would go on dates and not worry about what someone would think. I see my reflection in a window and I see me, rather than my vitiligo. I see me not a disease.

How did this happen? I dont know exactly but I suspect that my willingness to experience discomfort and face my fears played a role. Increasing my physical activity helped I am sure. Increased social activities helped too. Also, when you hear from 5 different girls you find attractive that they find you attractive too and they noticed your vitiligo that has removed most pigment from your hands…you gain insight into other peoples thoughts.

I discovered that a smile makes way more powerful an impression that any amount of vitiligo, most times. People can only be as kind to you as you are kind to yourself. Being kind to yourself is hard too. Its a struggle that is worth the discomfort you will feel.

What can change in our lives if we let pain and discomfort to drive us forward rather than keep us down? What can we do if we practice and work and struggle to get better at being us? What lessons will you teach yourself by allowing yourself to fall into an uncomfortable situation? What will discomfort permit you to do?

Embracing Vulnerability, Vitiligo and Ourselves.

Written by . Posted on August 10, 2011. Filed under Dealing with vitiligo, My Story. 3 Comments.

Have you been to TED? It is a place to find good presentations of ideas. I go there at least once a week to see what is new or just look for something I have not seen before.

Recently this one talk has captured my attention: The power of vulnerability, by Brene Brown. The talk is about human connection, how it happens, how it works and when it does not work. “When you ask people about connection, the stories they told me were about disconnection.” As people and as people with vitiligo, we know a thing or two about disconnection. “Is there something about me, that if people know it or see it, that I won’t be worthy of connection.” It is universal for humans. It is particular to people with vitiligo. We experience a fear of rejection in a way that is different for people without vitiligo. Still, we are all human and we can learn from each other, whether people have vitiligo or not, we can still learn from each other. I would be curious to hear what you all have to say about this talk, embedded below here:

Have you considered vulnerability to be a personal strength? Is it possible that vulnerability allows for significant personal connection? This is what is discussed.

Considering these ideas has brought about there thoughts: We are vulnerable to the people around us and we have vitiligo. We are not vulnerable because we have vitiligo. Vitiligo does not make us vulnerable. We are vulnerable to people because we are people.

We walk outside with spotted skin, two tone skin and hope that we will not be judged less beautiful than others. We hope that people will not notice. We hope that we will be accepted for who we are. We hope that we will be loved in such a way that our vitiligo will not matter. These are human concerns. All humans have these same concerns. The concerns of a person with vitiligo are colored by the disease vitiligo, yes, but they are universal human concerns.

We feel shame about a broad range of things. I wonder if having vitiligo will prevent someone from loving me in the same way someone wonders if they are too quirky enough to be loved, or too this or too that.

There is an endless supply of shame that we don’t confront in our lives. For me, shame will be something that I will confront as best as possible. When I am in the right company, I will talk about it. I will not allow shame to affect my life as it has in the past.

How does shame function in your life? What are you doing to rid yourself of shame?

Successful Vitiligo Treatment? Narrow Band UVB Phototherapy and Elidel

Written by . Posted on June 24, 2011. Filed under Dealing with vitiligo, Getting Rid Of Vitiligo, My Story. 9 Comments.

Are there successful vitiligo treatments? Yes.

There are a wide range of treatment options these days. I was introduced to several by dermatologists. The first treatment that I was prescribed was Narrow Band UVB Phototherapy for my vitiligo. On the website of the dermatologist I used it says that this treatment is a good option for widespread vitiligo, only takes a few minuets per session and has been successful for thousands of people. On the downside there is “long-term skin cancer concerns.”

Hmmm. Let’s consider this for a minuet. Your pigment will most likely regrow, though by no means is this a cure and in most cases when the treatment ends your vitiligo will spread and the trade off is increased chances of getting cancer which might kill you.

Increased chance of deadly disease for which there is no cure so that you can have some of your pigment back temporarily. You look better but you are this most closer to being dead from a painful disease. That does not appeal to me anymore. Also, the idea that the treatment sessions for Narrow Band UVB Phototherapy for vitiligo are short is false. They are short in the beginning. As the treatment progresses as it must, the sessions get longer. I was at the point where I was getting treatments 3 times a week and sessions we lasting 50 minuets per session. 4 hours our of my week for a more normal skin pigment and am increased chance of getting skin cancer.

I asked the nurse practitioners about the cancer risk. “Oh its not really a big deal.” Really? Its not a big deal. It is to me!

I should mention that the pigment did regrow after a couple months of treatment. When I stopped after 9 months the pigment started going away again. Would I have to spend quite a bit of time in treatment sessions continually, for the rest of my life to keep my skin looking normal? Also, I did get a nice tan on the spots that did have pigment. A plus I suppose.

How do we define success when it comes to vitiligo treatments. Normal skin pigmentation? Is that it? If the answer is yes, normal skin pigment is all we are after regardless of the side effects, then there are successful vitiligo treatments.

I think we ought to ask ourselves what is the price of being normal or beautiful. Are we willing accept a potentially shorter life in order to have a standardized skin tone? I am not willing.

That same dermatologist prescribed a topical immunomodulator called elidel also know as Pimecrolimus Topical. (You can read more about elidel/Pimecrolimus Topical on this National Institute of Health website maintained by the US Government. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000236/)

If you clicked that link you may have read the first line which I will include here: “A small number of patients who used pimecrolimus cream or another similar medication developed skin cancer or lymphoma (cancer in a part of the immune system).” The FDA required the drug manufacturer to place a black label on elidel because of the side effects that warned people of the risk. My doctor did not warn me about these risks.

I asked the nurse practitioner about elidel. I asked her: “What does it do?” She said, and I will never forget her response: “We don’t know. But we have found it to be helpful with vitiligo patients.” Really? You don’t know? We don’t know? Who is we exactly? The FDA seems to know something about what it does. The drub company that made the drug most know something. “We dont know…”

Curious about what elidel does? From the NIH website: “Pimecrolimus is used to control the symptoms of eczema (atopic dermatitis; a skin disease that causes the skin to be dry and itchy and to sometimes develop red, scaly rashes). Pimecrolimus is only used to treat patients who cannot use other medications for eczema, or whose symptoms were not controlled by other medications. Pimecrolimus is in a class of medications called topical calcineurin inhibitors. It works by stopping the immune system from producing substances that may cause eczema.”

“Stopping the immune system from producing substances that may cause eczema.” Seems fairly clear. As you may or may not know, vitiligo is an auto-immune disease. The bodies immune system attacks the cells that creates pigment. So, immunomodulators like elidel are helpful when you want to stop your skin from being depigmented by the immune system.

The dermatologist’s staff just lied to me. I should have walked away right then. I worked with that dermatologist and his staff for another 9 months or so. I should mention that this dermatologist is quite well established in the South Bay Area/Peninsula.

More cancer risk? Two treatments were prescribed that increased my risk of cancer. No warnings. They just sold me. They sold the insurance companies too on the the idea that increasing my risk of cancer was good for my health. Over the course of those months in treatment I cost my insurance company tens of thousands of dollars. What if I get cancer 20-30 years from now? How much will that cost an insurance company? Is this a wise course of action?

There are more options of course. The strange thing is that almost all treatments have serious potential side effects. You get treatment for a disease that is not at all life threatening and your chance of getting a deadly disease increases.

What is normal skin pigmentation worth? And can we get rid of vitiligo without deadly treatments? These are questions I would encourage anyone to ponder.

Everything is waiting for you. From David Whyte

Written by . Posted on June 10, 2011. Filed under Dealing with vitiligo, My Story. No comments.

A friend of mine sent this to me. It’s beautiful and addresses our struggle to be ourselves, comfortably, in the world. I struggle with wanting to be out in the world from time to time though, most of the time my more healthier desires win.

Thoughts like these are encouraging and I hope everyone that struggles with their own sense of self and self worth takes a few moments to read this:

Your great mistake is to act the drama
as if you were alone. As if life
were a progressive and cunning crime
with no witness to the tiny hidden
transgressions. To feel abandoned is to deny
the intimacy of your surroundings. Surely,
even you, at times, have felt the grand array;
the swelling presence, and the chorus, crowding
out your solo voice You must note
the way the soap dish enables you,
or the window latch grants you freedom.
Alertness is the hidden discipline of familiarity.
The stairs are your mentor of things
to come, the doors have always been there
to frighten you and invite you,
and the tiny speaker in the phone
is your dream-ladder to divinity.

Put down the weight of your aloneness and ease into
the conversation. The kettle is singing
even as it pours you a drink, the cooking pots
have left their arrogant aloofness and
seen the good in you at last. All the birds
and creatures of the world are unutterably
themselves. Everything is waiting for you.

Answering questions people ask about about vitiligo

Written by . Posted on February 6, 2011. Filed under Dealing with vitiligo, My Story. 21 Comments.

How do you answer people when they ask you about your vitiligo?

I like to be as upfront as possible. The other day my buddies girlfriend asked me what was wrong with my hands. She thought I had been painting recently. She was curious. So I told her I have vitiligo, the autoimmune disease. She has arthritis so she knows what autoimmune means and we moved on to another topic.

This is just a recent example of something that happens on a regular basis with me. My experience is that the only people that ask about the lack of pigment on my skin are the people that care. There is sometimes a note of confusion or concern in their voice, sometimes an awkwardness. But never has anyone asked about what is wrong with my skin unless the were genuinely interested in my well being. I appreciate the concern and while I don’t always appreciate having to explain that I have a disfiguring disease that will only get worse, I do like that people feel comfortable enough to voice their questions and concerns and I really like getting the disease out in the open.

I think this is different for adults. Kids can be mean. Some people commenting on the blog talk about how hard it is to make friends with highly visible vitiligo. This can be particularly hard for people with darker skin tones where the contrast is stark.

What can you do? It is possible to define yourself as something other than the person with the skin disease. Even for me, with this blog and my friends knowing about my disease, it’s not something that gets much discussion. Generally I don’t talk about it, or think about the fact that I have vitiligo. I find that the more attention and head space I give to my vitiligo the more than it brings me down. The more I focus on the things that matter the less attention it gets. If I focus on my work, my friends, on food, on fun, vitiligo becomes far less important. It really does not have to effect me. It does sometimes and yet I have a measure of control over whether or not I allow the fact that I have a disease to be significant. I am able to exercise control over my perspective and so I can also exercise control over other peoples perspective. This is a strength we all have. We live in worlds of meaning we create together. Just because I have vitiligo doesn’t mean my world is coming to an end.

The best fish tacos in the Bay Area: Huipil Cafe

Written by . Posted on January 11, 2011. Filed under Dealing with vitiligo, Going Gluten Free, My Story. No comments.

I love tacos. I love fish tacos, pollo tacos, al pastor tacos, asada tacos. I love tacos. I am not a taco aficionado exactly, but I am an enthusiast. I have been to almost 100 taquerias in the Bay Area and Peninsula. There are maybe ten that I frequent on a regular basis. But…

A couple weeks ago I was introduced by a client to a new place: Huipil Cafe. This place is a cut above any other Mexican restaurant I have been too. The food reset all my expectations. The fish tacos? Best I have ever had by a good measure. I can’t stop telling people about these tacos. Today I had lunch there with a couple friends. Third trip in 2 weeks. Yeah, its that good. One of my buddies said that we will sign up for yelp just to give these guys a good review. We all were in agreement. So are 58 people on yelp to date by the way: http://www.yelp.com/biz/huipil-redwood-city

The chips are good, home made tortillas, freshly fried each day and seasoned. The seasoning goes extremely well with the salsa and guacamole. The menu has a mix of tortas, which are fantastic I am told, as I am gluten free I have not had the pleasure myself, tacos, crispy tacos and breakfast items and daily specials. The daily specials are pretty good. The chicken mole is quite nice. The crispy tacos are the best ever. I have now had the fish, pollo, camarones, and al pastor. The fish, camarones and al pastor are on par with each other. Just great. Really great.

I want to go there for dinner and then for lunch again tomorrow. I want to keep going until I get sick of this place. I want to keep going until I can’t imagine going there again. I want to know how long it will take. Ten trips in a row? 100? I think it would be a good long while.

A year and a half ago, I stopped working for a company that is in the neighborhood of Huipil Cafe. This neighborhood, within a mile radius, has over 20 Mexican restaurants of all kinds, mostly taco and burrito shops. I have been to all of them. I used to love these places. Still do. About 6 months before I stopped working at this company, my performance degraded significantly. I just could not imagine continuing to commute to work to do something I could not imagine doing. The thought of returning to that job, commuting on a daily basis to this place where I used to work makes me want to puke. Yet the thought of making that same commute to get these tacos makes me rejoice. I can’t wait to get there. I could commute every day for these tacos. If you live in the SF Bay Area or you are visiting the SF Bay Area, I would recommend this place to you highly. In fact, I would love to take you there. Leave a comment and let’s meet up for some life changing tacos.

Any new things in your life bring you joy, surprisingly?

Vitiligo and Suicide

Written by . Posted on November 9, 2010. Filed under Dealing with vitiligo. 22 Comments.

If you have vitiligo and are thinking about suicide please this number: 1-800-273-8255. If you want to talk to me, Keith Evans, know that I would love to talk to to you anytime. This is my mobile number: (650) 918-7779. So please feel free to call me. Also, if you would rather talk online, we will arrange a time to talk: email me at keith @ ihavevitiligo . com.
Please note: I am not a trained professional and this website is merely a forum for individuals to get together to discuss their experiences with vitiligo.

I was checking my analytics today and I saw that someone had typed into google “i have vitiligo and im thinking about suicide.” This stopped me in my tracks. I have had vitiligo now for several years. I deal every day with the difficulty that vitiligo brings. It is hard to have vitiligo. It is depressing. It degrades your self-confidence. And I have let this disease stop me from going outside, from going on dates, from wearing shorts, from wearing sandals and from living my life as I want.

But this is not all that vitiligo has done for me. Vitiligo forced me to confront the ways in which is constructed my own self worth. I had to question the foundations upon which I developed my sense of self. It is easy in modern day America to be obsessed with looks. It is easy to be consumed with looking good. It is easy to be vain. Vanity runs rabid in this country.

And then you get diagnosed with a disease that has no cure and only gets worse with time. You get diagnosed with a disease that disfigures you more and more as you age. Your doctors give you no real hope. People look at you differently. You look at yourself differently. You worry about how people look at you. You get scared about how people will treat you.

People do look at you differently. People do notice. People do comment. I have heard from people in high school and primary school how mean people can be, how kids and teenagers do ostracize each other because of dermatological difference.

Willis commented on a post:

“I wish I had your optimism, I’ve been having vitiligo since elementary school. At first it didn’t bother me because I didn’t know what it was nor was I interested, but as time went by it kept spreading all over and kids kept asking me what happened to my skin. That was when I was a real outgoing person, now I just isolate myself from people I don’t know and always wear long sleeves to cover the marks on my arms, but I can’t hide the ones on my face. I lost my confidence and motivation to do anything. It’s even hard to go to church without little kids having to yell out “mommy look at his skin!!” It’s really dificult being in public and having this disease… :\”

I just isolate myself from people…it kills me to read that.

Eve writes:

“I have a patch of vitiligo near the bottom of my lip, and I’ve had it since I was in 5th grade ( about 11 ] and my lips are what you can say ” discolored “. I also have some patches only my right foot, and since I’ve fallen I have a patch on my left knee which is taking what seems to be taking forever to heal. I used to have tiny dots on my wrists, but they’ve gone away. I am dark skinned, so it shows more than anything. Who knew what this would bring me to? Now all i have to tell myself is expect the unexpected. Anyways, this sucks because I’m only 13 and have thought about suicide so many times that I can count :/ But I’ve told myself if I end my life, all my hopes and dreams would be drained. Think about all the people I would hurt, my niece keeps me motivated she’s only 2 and I want to be there to see her graduate, college. I cry everytime someone makes fun of me, I’ve been called bleached skin, Michael Jackson, and more. So many little things, but they hurt the most, and make my self esteem lower. I try to let it not get to me, but when I get home all hell breaks out. I don’t talk to anyone. I try to tell myself they’re just ignorant.. but it doesn’t help. There’s one other girl in my school that has Vitiligo, but I only speak to her at basketball practice. I sometimes want to start a conversation with her during the day, but I just don’t know how to. We have different personalities, but she’s the only other person that knows what it feels like to be in my shoes. Although for her she has a big circle patch on her forehead, and on her arms and legs. Her inner beauty shines through. She has the perfect smile, I guess one day I will talk to her. But probably not anytime soon.. Sometimes when people ask me, “What’s that on your lip,” or “What happened to your lip?” I just say nothing, but if they still continue to question me, I make up something dumb like It’s my allergies. Now, I give up, I’ve decided to speak up and say I have Vitiligo, it’s not contagious, if you still wanna talk to me; I’m here, if not.. It was nice meeting you. I believe I’m a nice person, but I guess now people judge you on the outside, before even saying, hello. I hope one day to meet someone with Vitiligo, or even many people; so I can just talk, because right now it seems no one understands. Mostly because where I live, there aren’t many people with the condition. But I feel like everything happens for a reason, and I am special in my own ways.”

-Eve.

Vitiligo breeds shame, embarrassment and it is damaging.There is no getting around this. For people with vitiligo every day is a struggle. But there is more than shame and embarrassment and damage. There is life! There are friends and family and lovers and food. I love food. I love friends and my family. They are precious to me. They are sustaining.

My friends refused to allow me to dwell on the negative effects of vitiligo. My friends refused to allow me to draw conclusions about my attractiveness. Would the opposite sex find me attractive with my disease? Yes they would and they do! Yes people will meet me and like me and enjoy my company. No, my dermatological difference will not be a marker of my inferiority. It is me. I am beautiful regardless of the variations in my skin tone.

When people talk about suicide and vitiligo I think about the difficulty that I have faced and I understand that question, that question that is called the only real question of philosophy. To be or not to be?

I would ask anyone that is wondering whether or not to continue living to reach out to the other people that live with vitiligo and talk to them. Ask them how they manage to live. Ask them how they find love. Ask them how they manage to get through each day having fun and looking forward to tomorrow.

Life is full and wonderful and vitiligo is part of my life. Have you thought about suicide? How do you deal with your vitiligo?