Sharing the peak of my distressful and stigmatised
days with Vitiligo!!!
I remember a fateful day I walked into a Business Centre @ Ilupeju to photocopy my CV and seated there was one overzealous man whom after staring at me for a while walked up to me rubbing my face and asking with very annoying laugh, what is this little girl? I was so surprised, embarrassed, insulted and amazed that I asked him, do you have to touch me to ask that. To my surprise he busted out asking me who I am that he can’t touch me anyhow he wanted, now all attention was on me and already some people were laughing, he went on asking why he can’t touch whether he was the one that asked me to try bleaching my skin and now left with white patches and that brought about serious laugh from everybody in there. At this time I had lost it, I was so humiliated and embarrassed, couldn’t hold it and was already crying and was ready for the worst, he went on having fun humiliating me, but at the time I had told him that if he dare touches me again that I will blow him. He advanced towards me again to touch me, but for the intervention of a woman in there who’s been watching all the while, I left there very sad and in tears.
Another time I felt so humiliated was the day a girl who got into the commercial bus I was already seated looked up and seeing my face (peak of my Vitiligo) screamed and the driver of the bus stooped and she jumped down from the bus. Every other person now started looking at me as if I had some contagious deadly disease; I tried ignoring their stares but was dying deep inside.
It was just a very difficult moment for me and having no-one to share with at the time, someone who understands what I was going through at the time. So much to say really about what one went through living with Vitiligo, was it the nasty unfriendly comments, was it friends trying to avoid you, was it stares and conclusions from the ignorant general public? In search of people to share experience with and to support each other Vitiligo Support and Awareness Foundation (VITSAF) was born and getting started with this was really a great turn around for me.
I became scared of life, my future and my dreams! I was scared of dying with my dreams; I hated being felt pity for. A message by my Pastor titled ‘MIND’ got me started. I got to understand that the responsibility of the mind in me is mine that making up my mind is entirely mine, that whatever I choose to do is my responsibility. I realized it’s a thing of the MIND. If you can work on your mind, you can have control over what gets you down or affects you. The purpose of the mind is to think, which it cannot do when overwrought. Peace of mind is of practical importance, for it releases that quality of mind-power that produces constructive results.
I had to tell my self the truth, I needed peace, needed to think again constructively, Vitiligo is here and I just have to live with it positively while managing and fighting. What people thought or say was not a problem anymore because what anybody says is their own opinion and never 100% accepted by all.
I found out that the power to fulfill my destiny is within me!
I am conquering with Positive Attitude!!!
I Conquered with Positive Attitude!!!
So much to share, as we bring it on, we share more and learn from eachother
I know how it feels to plan your life around “what if it triggers my Vitiligo?” I am working hard to leave that mentality behind.
For me, Vitiligo has run through my family for a few generations. My mom, aunt, grandmother all have it – in fact most of their bodies lost pigment. My sisters have small spots. I’m told that it has occurred in family members I never met. We are pale skinned and for my female relatives it is not as noticeable because they are already fair hair/skin. I am dark haired and in the summer – I tan and my spots draw attention. I have Vitiligo from my wrists to armpits and on my chest and neck. I still wore a strapless wedding gown this year:)
Small children will stop and ask me or touch me and ask what “is wrong” with my arms. That is less uncomfortable than it used to be. I find that most people refuse to acknowledge it. But since I got Vitiligo – at the age of 38 yrs (older than my relatives who all got it in their 20′s) – I have noticed ALOT of other folks around me with varying degrees.
The lady in the store whose lower half of her face had Vitiligo. The fingers/hands of the man in the elevator. The ankle of the drunk man at a concert. (he tripped in front of me:) . The girls elbows at the restaurant. The midwife at my doctors office. She is of African descent and at a glance appears to be wearing a white scarf. It is actually just that most of her neck is depigmented. My brother’s girlfriend has it on her face.
Sometimes I smile hello when I see someone who shares Vitiligo and point to my own skin. I am never sure if they are comfortable in their skin so I’m careful not to offend but I know that there are so many more of us than I realized!
We are the faces of Vitiligo and we know the true meaning of “being comfortable in our skin”
Thank you for this blog:)
When I first came in contact with someone with vitiligo, I was a child. I wondered what was wrong, with the uncle but I was afraid to ask. Later in life, my friend’s son developed it. Then an adult friend started to have some patches on his face. soon his lips were bright pink.
We asked what was wrong. he told us, we empathized but that was the best we could do.
Then I remembered that my Father and Brother had suffered skin problems too. They had these ugly black patches on their legs. Lucky they were men and could cover up with trousers. Little did I know then that I would get them too.
In 1994, these things began to develop on my neck, face and elbows. They cleared up only to reappear on my knees. this time the patches would not go away. A visit to the Dermatologist revealed that I had Atopic Dermatitis. it was not an infection, it would not go away. it was an allergy and I had and still do not have any way of knowing what I am reacting to.
Now I have a patch on my left foot. Everyone can see it and someone at church once asked in a loud voice if it was leprosy? I wished the ground would open up there and then. someone else after listening to my explanation, started talking about rejecting it, generational curses etc. To each his own understanding I say. But I have grown and now I simply explain that its an allergy and move on.
I believe that God makes us all special with our quirks and good points. and so even though atopic dermatitis is a nuisance (it can itch like crazy) I find creative means of getting on with life and celebrating what’s good about me and others I meet. In its other forms this allergy manifests as Asthma, Sinusitis and Hay fever. Some of my family members have one or more of these reactions. I am just so grateful that in all things God loves us and has plans to prosper us, whether our skin is baby smooth or not.
PS: A good remedy for itchy skin is Aloe Vera. Just scoop out the gel and rub it on. It provides a soothing coolness and itching won’t start up for hours. Shea butter (Ori) in its natural form is also good.
I know how it feels though i am not living with it.its only God that knows best ……………..really dont ve much to add.my dear OGO tz been lng though.hope to hear from you soonest…..**smile+winks**
There is a lot of ignorance about vitiligo. You’ve got the right attitude and it’s a great thing you are doing sharing your experience with others. Let’s hope that as people get to know more about vitiligo, the ignorance will gradually become a thing of the past. Keep up the good work!
I got vitiligo when i was about 8 years old. It started as a dot on my leg, and i remember some friends i used to skip rope with were as curious as i was, as to what it i was suffering from. The spot on my leg started spreading and my mom took me to different dermatologists for treatment, but they did not seem to know what they were doing. At times when i went to see doctors, they would call their interns.. it was very humiliating as i would be asked to undress before strangers..
There was a time i was given medicine that i used to apply and sit in the sun and i got burnt, and got abscesses on my legs. I was once given medication which after seeking an opinion from a pharmacist aunt of mine after i had taken a pill, i discovered one of the side effects was loss of eyesight. I tried accupuncture and chinese medicine and ultimately quit on medication.
I remember when i was beginning High School i explained to our Swimming Coach what vitiligo is and that it is not contagious, but she told me i could not get into the pool without having a letter from a doctor. I got the letter from the doctor but i did not start swimming until i was finishing school, when she approached me and asked me why i never went back. I just didn’t like how she handled the whole situation you know, but i guess she was ignorant, and was just being cautious.
My vitiligo has never spread since for which i thank God. My family accepted it and my friends too. I have had a few challenges with relationships with the opposite sex. When i explain the condition to them they usually take off, or withdraw, or we usually just end up becoming friends.
But all in all all my negative experiences because of Vitiligo have only strengthened my resolve to live a full life, to pursue my dreams, and to raise awareness about vitiligo so that other people may not have to go through the same experiences some of us have had to go through. I decided i would still wear my linen shorts and knee length dresses – even when the tailor felt that my clothes needed to be longer to hide my legs, and the stares, and lot of explanations i had to give to everyone.
The first ever Vitiligo World Congress was held in Milan this year and i think we have reached a point where we are expanding our knowledge base on Vitiligo and spearhead research into it. For me awareness activities, counselling and advocacy are tools I find very to useful to deal with the impacts of Vitiligo.
I was fine until I reach 19. Nothing was wrong and I was indeed happy for having such a nice flow until i discover two white spots in my face. I was’nt that shocked because i thought it would just be something normal. But when time passes I realised that those spots were becoming patches and it started spreading all over my face. I was terribly sad and in one point I got stucked thinking about it. The worst part is I just joined university and I have to meet a lot of people out there and i knew that it was going to be a disaster for me. But when i entered university, I knew that people look at my face. I always blame myself for having vitiligo eventhough I know its not my fault and I was in the peak of deppression because my family members was worried especially my sister.
She use to say that she love to be like me but when I got vitiligo, she cried and she told me that she will be happy if she had vitiligo so that she would look like me. In that point, I felt that my vitiligo did’nt give me any bad impact but it shows how much my sister loved me. I was shocked and in the same time i was touched by her remarks.
i was also nineteen. i just got admission and was so eager to join the university. it was around the time the world was gearing to witness a new millenium. i one day noticed a small spot on my chest. a closer examination also revealed that the hair growing there as well had turned white. being such a tiny speck, i actually was kind of fond of it. weeks passed and i noticed that it had started to grow and appear on other parts of my chest. then i really got worried. i then told my sister who was then my benefactor who in turn suggested that we visit the hospital. the doctor was actually puzzled at the sight. she didn’t seem to know what it was either and she wasn’t able to hide it on her face. this even compounded my worry. she ended up referring me to a specialist hospital. they couldn’t help either. by this time it had spread to my right arm and was coming up to the right side of my neck. i was utterly depressed. suddenly going to the university seemed like a terrible ideah. i had completely lost my self confidence. i eventually stopped going out all together. people who came to my house and saw me or heard about it started recommending i go to traditional herbalists. some even said its a common affliction and i would find a cure with the herbalists. i desperately gave it a shot. but the depigmentation only kept spreading even faster. by now it had reached the side of my head, into my mouth on my nose and close to my eye. a large chunk of my hair particularly from the back of the right side had a lot of white hair even though the skin seemed normal in my hair. i felt like my life was over. i’ve turned to a monster. some of my good friends tried to get me to go out but they all failed. the only time i went out was when i was told of another herbalist and wanted to try my luck. the stares i got from strangers and those that knew me on the street seemed to bore a hole in my heart each time. i developed a method of walking on the extreme right of the road so almost every one will pass by my left and see my unaffected side. for some reason it only affected my right side. till this day i still feel less confident about my right side. i went on skipping from one herbalist to another and some hospitals as well including travelling to the nations capital to try and get the best help but nothing worked. by now i had so many different kinds of traditional and herbal medicines from oils to barks and leaves and powders that i either ate applied on my skin at certain times and even some that i boiled to take my bath with.i eventually tried to do some research on the internet which was hard enough to get back then. it only succeeded in making me more confused. i read about some special kind of u.v light treatment which obviously i would never be able to get. i improvised, i would take off my shirt and lie down in the midday sun exposing my affected parts as much as i could. i would stay so long that my affected parts which offer no protection from the sun’s harmful rays become burned, sore and cracked. i would endure it a bit hoping when it heals. it would turn black like most scars or at least miraculously accelerate some kind of regeneration. and still nothing worked. i told my sister that i dont want to go to university anymore. typically she insisted that its not that bad and i still have my whole life to live. i must have eventually given up because i then started going out . first only in the evening or dark then later on even during the day but only with my shirt buttoned up to the collar and in long sleeve shirts to hide the ones around my bicep and forearm. i still kept to my habit of walking on the far right of the road to prevent being hurt by those painful stares. finally i did get to the unversity. however i developed a new habit of keeping to myself. i felt i couldn’t stand myself in the mirror. what more of somebody else. surprisingly i still made a few friends. even some girls much to my utter surprise. i guess time heals all as i stopped sulking up about it and just live my life best i can. then, almost too suddenly i noticed that it had started to recede. it was very minimal but it did recede a bit. and then it kept receding and receding. although it was very very slow but in about two years it did recede enough for me to feel like i can actually get a girlfriend.
The years rolled by and today it most of it has gone except a chunk on my right breast. i am now able to walk comfortably in public even with just a t shirt. i dont know what it reverse itself but im convinced it must have been one of the traditional stuff i tried. i just cant be sure what because they were so many. today i feel so much empathy when i see a person with vitligo. i tried to talk and make friends with one once to ease his suffering(as i assumed) but be brushed me off. i realize that there is a massive unawareness about the disease. most people just assume its a fire scar. i also was one of these people. i have most of my normal life back but it has been a long toil for over ten years and its still not totally gone thought you might never know till i take my shirt off. i hope a cure is found or at least postitive awareness is spread so people dont have to go through so much emotional pain over something that feels totally normal physically.
sorry for the very long post its always has and still is very emotional for me with vitligo and thanks for reading.
I have had vitiligo for about 20 years I m a middle age man ,living in Norway originally from Africa , I have light brown skin color, my vitiligo first it starts some spots on my body and it disappears easily by just changing my diet to absolute variety..don`t ask me what coz I eat almost all type of food in a super market ? I just started to eat varaity of food /drink tings that i normally don`t buy , I was lucky I got repigmentation easily that time, except some spots like a size of dime stay stable then I tatto them by micropigmentation and lived with out worrying about vitiligo for about 10 years then it comes again about 6-7 years ago small spots here and there ,then I couldnt stop it what ever I do it doesn`t help I have tried most remedies, that is why it makes me think some times vitiligo has its own world.
when vit starts to show up in my face ,,,I got panic I have travelled the whole way to Australia to get a good matching make up called Microskin it is one of the best cosmetic it helps but for me It was not so good as the advert.
I am self employed, after my vit is getting worst I decide to take it easy ,reduced my business and focus on vitiligo I m a member in many vitiligo communities and I give it a time and try to know about vitiligo, what I experience is the more you don`t know the more stressful and confusing it is , it is not good for vitiligo , even though no body know the main case of vitiligo, knowing that fact and the possible safe treatments , it makes me feel relaxed..even if we don`t have control on the situation it is good for vitiligo to have confidence and belive on which treatment we are going to try with a help of God.
since the beginning of 2010 I see new vitiligo dots every two weeks or month I had a mixed experience while I tried ayorvedic and UVB , I got some pigment and loose pigment other side I stopped both this summer , If the natural repigmentation is slow ,I want to start the NB UVB alone later.
I will let you know the result.
Bamsegutt
Repigmentation naturally
Now a days since I participated in a world vitiligo conference and learning from all vitiligo communities and forums I know more about vitiligo and saw that scientists are working hard around the world ,It makes me relaxed and I took it easy and learned to be patent and decided to take treatments one at time for longer period ,until some thing that realy helps for all comes.
I see some repigmentation on my body spots that i don`t treat ,now my vitiligo is stable for the last two months and see good sign I am hoping It will continue the repigmentation like last time just naturally.
I am hidden vitis but taking some photos ,I promise to my self If I got good repigmentation like last time I will publish the photos.
Iam using Protopic on my face ,but most repigmentation I m observing is on the place that I don`t do any ting.I stopp using Protopic after using for 5 monthes and not see good result, last alternative is Melanocyte transplant.
Bamsegutt
Thanks for sharing Bamsegutt, Sagir, Cathrine, Krissy,Shiba, Caroline and all that left kind words of encouragement.
These stories alone is capable of impacting someone positively, you are all really bold and Positive to have shared.
Together we can change the negative perception of Vitiligo both by the man on the Street and what a sufferer is meant to believe. Awareness is on-going and truly We Shall CONQUER!!!
Self Acceptance, Self Love is key!!!!!!
I was diagnosed with Segmental Vitiligo 24 years ago! At first I wasn’t bothered by it but as the years progressed more spots became evident and visibile. It wasn’t until four years ago that my hands became more noticeable. I was tormented and bothered as I did not know how others would react, HOWEVER….. I know that beauty truly comes from within and that those that truly love me will see the exterior. I never gave much thought to Vitiligo until recently and realized that there is a whole other world out there of people that I can learn from HENCE I found this website and its the first time that I share my story. I am so encouraged to see that VITILIGO will be given a voice and a forum!
I have segmental Vitiligo too Betsy. You are right Beauty is skin deep…..nice to have you share your Vitiligo story for the first time on our Blog.
Yes Vitiligo is being given a voice through some special people round the globe, we are our bit in Africa and we are determined to bring Vitiligo to World Center stage.
Thank you for sharing
Hi guys,
All your stories are very touchy and inspiring. I have had this white patch on the left side of my forehead as long as i can remember. I will be 37 in December and i noticed it when i was like 6 years old. It came as a very white patch on my head and then i was told mayb i ate raw cocoyam. My father thank God was wide travelled so he went to India and got this very short bottle wit liquid in it which i had to apply on the patch every night before going to bed. But we all saw that the place became darker and it never spread more than were it was. I have always had positive feelings about myself so i never did feel bad when people stare at me then and some will ask is it fire burn, did u have an accident all i say and stil say is that i just saw it coming or Na birth mark. Though my vit. is just a small patch but i pray that a cure shud come up fast for those who have it all over so they can live life without inferiority. But i say to you.. You are the only one responsible for your happiness and to.
Ogo i say Kudos to you for the good work you are doin and May Godly richly bless you and grant you the strenght.
Peace,
Omua.
Hello Omua,
Thanks so very much for sharing, I truly appreciate your kind words and prayers….
Please join us as much as you can in Vitiligo Awareness especially as we campaign and advocate for World Vitiligo Day for June 25th. Please sign our petition http://www.vitsaf.org/world-vitiligo-day-june-25 to that regard, please invite your friends and family to do same.
Thank you
I was diagnosed with Vitiligo when I was 8 years old. I have a small patch of it around the corner of mouth. When you have a condition like this at such a young age, living in the U.S., it’s hard to accept or even understand what you truly have and what you will go through in your life connected with this disease. I had UV treatments as a kid that allowed my skin to re-pigment by about 65% or higher. It was really successful but there’s still that small patch that refuses to go away
During my teens and early adulthood, I fought depression, thoughts of suicide, self-loathing, feeling alone, and hating myself over my vitiligo. Even though as a female, many people have told me that I was beautiful and many guys have wanted to date me, I never believed that I was beautiful. I used to think people were lying to me to make me feel better. I refused going out with friends, participating in sports, or doing anything that would put me in the public eye. I used to hate large crowds of people because I knew they would stare. When I was 21, I started using cosmetics to cover it up, and while it game me temporary relief, I felt like I was lying to myself and the world by covering something up that I didn’t ask for. After a year, I threw the makeup away. It did more harm than good for me.
I am now 25 years old and have realized that having Vitiligo has actually made me a much stronger person and more confident than most people. I feel like I attracted this disease because I am supposed to help with raising awareness about it and helping society understand that it affects a lot of people in the world. I am beautiful inside and out, no matter what others may think. I will not let my skin keep me from living my life to the fullest and taking pride in my self-worth or self-esteem. My Creator designed me perfectly in His/Her own image.
It has been an extremely long journey to get to this point and in no way has it been easy but I am proud that I am who I am and that I look the way I do. I am no longer a sufferer and am now a survivor!
Thanks for sharing Adele, really reading all the stories gives me hope that we shall all conquer someday…….
Together we can Adele, yes lets get on with vitiligo Awareness ….please sign our petition for Campaign and Advocacy for World Vitiligo Day http://www.vitsaf.org/world-vitiligo-day-june-25.
Thanks once again and please come around here often.
I am also one of us.I jt woke up one mornin nd saw a large white patch under my right eye in 2003 after d birth of my 1st daughter and it has bn spreadin ova my body. I dont want 2 recount all i went tru lukin 4 a cure. Though i am nw confident abt me,at a time i almost lost it completely.My family were wondaful nd dat was my savin grace. God is d giver of streangth 2 all of us wit vit,jt b optimistic abt life. God bless u OGO 4 dis vision.
Thanks so much Gloria for sharing, when you say you don’t want to recount all you went through looking for a cure…..I can only imagine, truly anyone who as not worn this shoe will hardly understand how and where it pinches.I am glad you are confident now and living your life to the full.
Thanks for that advise to all…’Just be Optimistic about Life!!!
Am kenny 4rm ogunstate and av been living with vitiligo since 2002 and am now 23yrs, although it is nt in al my body but it is on my lips d edge of my nose, my 2harms my hand, my breast my knee, my leg. I use to think in 2yrs tym it wil spread al over my body. Pls it seems am d only 1 living with dis vitiligo in ogunstate and pple do look at me as if there is sheat on my body atimes i get scared of going out becus i use to feel dat i wil be d television 4 people to watch. Is getting worse evryday. So many times my daughter use to ask me dat , mummy wat is dis in ur hand and i wil say it is natural but inside me i use 2 feel sad. Pls anytin to use atleast if nt al wil go i expect little of it to go Or wat to use to stop dis disease becus 2 me is a disease. Pls somebody shuld advice. Thanks
Hello kenny,
I am sorry replying this late, I had replied before, but guess it didnt upload possibly due to network issues.
I sent you an email as promised but yet to read from you. One thing I can tell you is that you should try and think and worry less about Vitiligo because the more you think and worry about it the more it gets. Let your daughter understand what Vitiligo is, start educating her as much as you can. Believe me people are actually not staring at you that much, you are only calling their attention to it by your carriage and way of living with it.
I believe you got my sms, let me know how you are today and how you are feeling now.
Welcome to 2012!
Thoughts on Managing Vitiligo Naturally
Dr. Ben Kim story
Posted By Dr. Ben Kim
http://www.drbenkim.com/vitiligo-natural-management.htm
My experience with vitiligo started when I was nineteen years old. I was in my second year of university, struggling to meet academic expectations, and unhappy with my relationships at home.
Ultimately, trying to meet my parents’ expectations for my academic career and failing to reconcile the mixed feelings that I had about being a pastor’s kid of a new church created more pressure than I was capable of handling.
During this angst-filled time, I distinctly remember days when I would lie face down in bed and wish that I could get sick in some way so that there would be less expectations for my life.
I guess on some level, I thought that if I became ill, my parents would feel sorry for me and show me that it was okay if I didn’t fulfill their hopes for my life.
After several months of constant stress, worry, and self-pity, I woke up one day and noticed a small patch of white skin under my right eye.
I didn’t think too much of it until a few days later, I noticed another white spot on my neck.
A few weeks and several new spots later, a visit with our family doctor and a dermatologist led to a diagnosis of vitiligo.
Over the next several years, unaware of how my diet and emotional stress were causing steady progression of my vitiligo, I went on to lose about 25 percent of my skin color.
Fortunately, my studies led me to a field of promoting health via healthy living called natural hygiene. Over time, I came to an understanding of autoimmune illness, which helped me formulate a plan to address vitiligo through natural means.
Here’s what everyone with vitiligo should know:
Your melanocytes (pigment-producing cells), unless irreversibly destroyed, are always ready and willing to restore pigment to your skin.
In order to restore color to areas of your skin where your melanocytes are still functional, the key is to make sure that your diet and lifestyle (including emotional stress) don’t continuously undo the re-pigmenting work that your melanocytes are constantly engaged in.
If you read through my articles on the root causes of autoimmune illness and natural ways to prevent and reverse autoimmune illness, you’ll have the knowledge you need to follow a diet and lifestyle that minimize the inflammation that characterizes the loss of skin color in people with vitiligo.
To briefly summarize these dietary and lifestyle measures, they are:
Eat a plant-centered diet – the bulk of your food choices should be vegetables, fruits, legumes, and whole grains that your body doesn’t have trouble digesting.
Ensure adequate intake of vitamin B12 and DHA (an omega-3 fatty acid that strict vegans tend to be deficient in).
Ensure adequate vitamin D status through diet and sunlight exposure and supplementation if necessary.
Avoid intake of dairy products and flesh meats.
If you choose to eat some animal products, stick with small amounts of organic eggs and wild fish. Closer to raw is best. Lightly cooked is acceptable.
Strive to be emotionally balanced. Work at being a master of managing emotional stressors.
Get high quality sleep as often as possible. For most humans, nine to ten hours of restful sleep every day is an optimal amount.
These measures give your melanocytes all the support that they could ask for to produce pigment in areas that need it, as well as to minimize new bouts of inflammation that can create more loss of skin color.
But there is one other essential stimulus for re-pigmentation: sunlight exposure.
Your melanocytes produce pigment (melanin) in response to sunlight exposure, as melanin serves to protect your skin against burning.
The trouble with this requirement for re-pigmentation is that for someone with vitiligo, sunlight exposure is hard to tolerate physically and emotionally.
On a pure physical level, the challenge is avoiding sunburn because areas with no pigment are unprotected against ultraviolet rays.
For this challenge, I recommend being ultra conservative with sunlight exposure – just a few minutes at a time – and increasing intake of red beets, carrots, and dark green vegetables – these pigment-rich vegetables appear to provide some level of natural protection against sunburning from the inside-out. Just be careful not to overdo it with the beets and carrots if you have a problem with your blood sugar-regulating mechanisms, as these root vegetables are rich in natural sugars.
Emotionally, sunlight exposure can be challenging because it leads to greater contrast between areas that still have pigment and areas that have lost pigment.
And because some melanocytes in de-pigmented areas may no longer be functional, there’s no guarantee of full re-pigmentation with sunlight exposure, which means that getting lots of sun can help stimulate some re-pigmentation, but at the cost of having the vitiligo that remains to be more noticeable.
As someone who has lived with vitiligo for almost 20 years, I know full well that the emotional component of living with vitiligo can be a huge challenge; it’s not an exaggeration to say that it can be crippling.
Because you look different, particularly if you have darker complexion to begin with, having your vitiligo be more noticeable with sunlight exposure increases the number of stares that you get on the street. It can affect what you wear, your confidence level, and how you interact with others.
Because everyone’s situation is unique, I don’t think there are any sure-fire ways to deal with and overcome the emotional challenges of living with vitiligo. My belief is that all of us have to create our own journeys and make choices and realizations on our own timetables.
Though my vitiligo has been relatively stable for many years now and I do experience some re-pigmentation here and there during the summers, I would be lying if I said that I never feel self conscious about it.
At the same time, I can say that I’m deeply grateful for all of the experiences and realizations that I’ve had because of my vitiligo.
Developing vitiligo was the main stimulus that caused me to learn about experiencing optimal health through healthy living – I’m grateful in knowing that I’m coming close to accessing my full health and life potential because of my daily choices.
Having vitiligo has deepened my capacity to empathize with others who suffer with anxiety about their appearance or any other perceived disability.
Having vitiligo has given me the gift of being able to almost instantly identify and appreciate people who have extra compassion for others. I think it takes especially kind souls to treat others with vitiligo or some other unique physical trait as though nothing stands out. I’m not writing about being apathetic to another person’s appearance at first glance. Rather, I’m thinking about this special gift that some people have, this gift of communicating warmth, acceptance, and genuine care through their friendly gaze. And I believe that living with vitiligo has developed my radar for such people.
Really, I could write many pages on how having vitiligo has made me feel more human. It’s forced me to mature in ways that I may not have without it.
During the first few years, I remember being humiliated whenever someone asked me about my vitiligo. For example, one day while having lunch with a good friend and Matt, my friend’s adorable toddler son, Matt suddenly paused his chewing, looked at me intently with cupcake icing covering his lips, and asked, “what are those white spots around your mouth?”
Matt’s question, perfectly innocent and appropriate for an inquisitive 3-year old, paralyzed me. I was too embarrassed to answer.
As the years went by and I grew to accept that I shouldn’t be ashamed of my vitiligo, I realized that people who ask about vitiligo – especially young kids – just want to know more about it; rarely is there intention to cause embarrassment.
These days, whenever children ask me about my white spots, I typically ask them if they know of any animals that have white spots, say, those that emit “moos” or dogs that live at fire halls. As soon as their eyes answer yes, I explain that I’m the same way, that I have white spots here and there, but that they don’t hurt, that that this is just the way that I am, just like some animals. And as soon as they understand this, I see in their eyes that I am nothing unusual to them – I’m just Ben, Joshua and Noah’s daddy.
Adults really are the same as children in this regard. Even those who stare at first and appear to be a bit uncomfortable, wondering if what I have is contagious – once they see that I’m comfortable with who I am, it seems that they become more comfortable with who I am.
When I was younger and not as comfortable with my vitiligo, I think that others could feel my self consciousness, which may have contributed to them being extra conscious of my unique appearance.
I suppose my point here is that natural management of vitiligo should go far beyond nutritional considerations. In almost all cases, even those involving young children, my belief is that there is a significant emotional component. To work at curing vitiligo without taking time to consider the many life lessons that it presents is to miss out on some serious marrow, I think.
Which brings us to one final life lesson that I’ve learned from living with vitiligo, one that I’ll end this post with:
“…there is nothing either good or bad, but thinking makes it so.”
Thanks to my good friend, Chet Day for putting good old Shakespeare back into my head this morning.
If you would like to share any thoughts on vitiligo or anything related to the main themes in this post, please feel free to add to this discussion via the comments section below. http://www.drbenkim.com/vitiligo-natural-management.htm
Thanks for reading.