I have been highlighting the psychological and emotional effects that Vitiligo can have on an individual, as well as a lengthy discussion about being in the sun without any pigment to protect your skin, but honestly... what is living with Vitiligo REALLY like? Looking at examples from across the globe, here are some brutally honest home truths, thoughts and realisations:
People with Vitiligo are prone to other illnesses such as alopecia, diabetes, thyroid disease and of course, skin cancer.
I myself have suffered a great deal of hair loss and receding hairline during my teenage years. I cannot tell you how scary this is. A fifteen-year-old girl should not have to be using her time to research hair transplant procedures because she is paranoid about the amount of her hair that is falling out. Thankfully, this is no longer so much of an issue, but added to the fact that I have been dyeing my hair, which grows white, since the age of 12, I live in constant fear of what this could do to my hair over time. It is necessary for me to dye the white hair, as hair without pigment is also vulnerable to the sun and can make the scalp vulnerable as a result. On a social level, being on the brink of puberty with white roots is not fun and extremely difficult to explain to your peers. I also occasionally grow white eyelashes. My body hair grows white. We are all mature enough to understand how this can be quite devastating in a young adult on many levels.
I try to get blood tests every three to four years to monitor whether I could develop diabetes or not. I was recently tested for thyroid disease due to issues with my throat and nasal passageway but thankfully they were not linked. I must also be aware of any dark spots that appear, which may indeed be dangerous moles rather than my original pigment "freckles", as I like to call them.
Aged 13 or 14 - you can see my hair is growing white and the brown patches on my face
Vitiligo is usually found in, or can start appearing in, the orifices of the body - around the eyes, nose, mouth, backs of knees, elbows and armpits. This list also includes the genitals.
How traumatising it must be for a young adult, or any adult for that matter, to have patchy skin somewhere as personal as your genitals. With the level of ignorance regarding sex education in some parts of the world, this in itself could be enough to shun someone from society, be it in a high school or a village, or labelled as "diseased" by your peers.
How many people would want to be served food in a restaurant by someone whose hands had depigmentation patches? Be honest with yourself. Not everyone is as accepting as you think you are. Having Vitiligo can affect a person's chances for employment in a business where interaction with customers is key. If visible tattoos can be enough to bother a client and affect employment, don't think that this can't as well.
Patches on the face can look comical and lead to many comments and bullying. A lot of people with the condition invest in makeup to cover depigmentation patches. When I have researched such makeup, I found that it is akin to stage makeup (i.e. the makeup used in theatre production), and a person can go to stores that sell stage makeup products and have them mix the right skin tone in order to blend into the natural skin whilst covering the lighter patches. Having makeup mixed for you is incredibly expensive, and the reason why this particular makeup is used over, say, commercial or mainstream products is because the pigment in the makeup is thicker and will therefore provide better and longer-lasting coverage throughout the day. This must not be fun at all during summer and I'm curious to know if this qualifies as a medical expense. I suspect the answer would be no.
In India, Vitiligo is ranked as one of the top three diseases alongside malaria & leprosy
Controversial but it needs to be done in order to really highlight how people across the world are made to suffer for having this condition...
This is quite shocking to me considering the severity of malaria and leprosy. Vitiligo is neither life-threatening nor contagious and yet, being ranked with other such diseases or illnesses has serious social implications - many people may fail to realise that Vitiligo is, more or less, harmless to others. Furthermore, according to an article I read online, which was very informative about the Indian culture's attitude towards people with Vitiligo, a woman who has it is likely to never get married, and should a woman develop Vitiligo following marriage, her husband could divorce her...
In THIS day and age?! Are you kidding me?!
This was my first reaction to reading this information. My second reaction was to scoff at the irony that women with fairer skin are knowingly held in high regard in India and are considered to be more beautiful (look at Bollywood and what its idea of beauty is), and yet a woman whose skin is changing to a lighter colour should be scorned and ridiculed by such a society that openly prefers lighter skin, and treated as badly as someone with leprosy? Amazing. The third thought to cross my mind was, I wonder if a sufferer like me would be scorned in India for having such a "disease" to such an extent, or revered for having managed to change to completely fair?
Please note that in no way am I maliciously attacking India, I am simply highlighting how hypocritical it is or ironic in the case of my situation.
This also brings to mind a number of times when I have been told by people of Indian heritage in my own country of Trinidad and Tobago: "Well, you're white now so you're lucky..."
I'm white now so I'm lucky... can someone explain to me why on earth I should consider myself lucky? The only thing lucky about me is this:- I am lucky that I haven't let society dictate what kind of person I should be because of my Vitiligo...
In East Africa, albinos are targeted for body parts to use in black magic. I have also heard stories of albinos being eaten. I'm sure they don't feel lucky for being white. The world is an amazing place.
You can read more of this incredibly interesting article covering Vitligo in the Indian culture at:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=269995
When it says that Vitiligo is one of the top three diseases, does it mean the perception of its severity or the number of people affected?
ReplyDeleteIt seems as if it's the "uneducated" that see Vitiligo as a threat. In that respect, you should be applauded for your efforts in raising awareness. Slowly but surely, the walls must be torn down
I think the points you made regarding being served at a restaurant or getting a job are fair. For some reason, I never saw Vitiligo as a "threat" and was never disgusted by it (intrigued maybe), even before I knew what it was. It seemed as if it was something that affected the individual and not something that could be spread. Seems I was wise beyond my years :P
Had knowledge of Vitiligo not advanced significantly, I think it's fair to say it could be classed as a disability, in the sense that the public perception of the condition will prevent the affected person from achieving as much as a "normal" person
In retrospect, I'm thinking that perhaps we were all a bit too hard on Michael. We never saw him "changing" so it was difficult to accept that his skin condition was anything other than intentional.
ReplyDeleteI am proud of you and want to ask if you can become a member and/or active participant of www.universalvitiligo.ning.com I have somewhat complete vitiligo as well.it is more focused on people that lost all their pigment like you, MJ RIP and many others and focus on issues that we face even after we went thru the very traumatic transition years. Thanks and regards
ReplyDeleteI am proud of you & you're truely inspirational. You look absolutly beautiful, you go girl! When I saw your interview for the first time in my life I said to myself if the worst comes total depigmentation may not be that bad. I'm black like you so I'm scared of losing my identity more than anything... I'm glad having vitiligo didn't inhibit you from having a fruitful life.I wish MJ RIP was more proactive in raising awareness, then again when he claimed to suffer from vitiligo nobody bothered to find out what vitiligo was.
ReplyDeleteThe irony is the first prime minister of the country ranked Vitiligo as one of the dreaded disease. Yes, it is a dreaded disease psychologically, but I am sure he doesnt quote it that way. When primeminister of the country is not aware of the country we cant expect 40% of the illerate population to understand it.
ReplyDeleteIn the current world where people could go to the moon and split the atom to produce a atomic bomb, it is unfortunate that a cure is not found to this disease yet. This shows that noone is taking it seriously as it takes a lot a to understand the suffering that comes with it.
I sympathise with you because of the journey you have had to endure, and still have to because of your current skin colour(or lack therof), but you are making a major generalisation about an entire race. Frankly, it is not just ignorant, but you should know better than to make such generalisations after what you have experienced yourself.
ReplyDeleteI am of mixed heritage myself, half black and half indian, and when I go to India to visit relatives, they have always made me feel so proud of my chocolate brown skin. ALL Indians do not revere white skin. Yes, there is a part of the society that idolises fairer skin, but how is that different from African and even Oriental populations who use the same bleaching creams to make themselves fairer in complexion? Maybe you should pay a visit to the African and Asian continents to see who features on their billboards before condemning just one nation!
I have heard so many comments from my black family and friends about "fair skin" and "pretty hair", and we all know that so much of that type of mentality exists in black society also. I am so disappointed that you have chosen to pick on one race. Instead, you should have focused on ignorant PEOPLE who judge others by silly things like the colour of their skin because by making an entire country the focal point of your disdain, you prove yourself not to be any different from them.
PEOPLE are PEOPLE. FULL STOP!
Dear Maya,
ReplyDeleteThank you for reading the post and thank you for your response which was indeed passionate and I appreciate.
I would like the opportunity to defend myself here by saying that you should read the rest of my blog posts where I mention incidents with members of all races regarding my Vitiligo and not just Indians... I chose to highlight India in this blog post because it is one of the more extreme circumstances of the examples I was trying to point out. If you read a later post written on this blog regarding Michael Jackson, I do mention the ridiculous amounts of West Indian women who are also obsessed with bleaching their skin.
Furthermore, anything that I commented on regarding India was a response to the article that I posted the link to which was written by an Indian person, not to mention that I myself have Indian roots. It is certain that ALL Indians do not revere white skin, I DID specifically pinpoint Bollywood and the media in my post, I cannot speak for every Indian in India... it is a big country. However, I CAN also comment on the Indians that live in Trinidad. If you knew anything of my country you would know it was made up of equal percentage of both Africans and Indians, and not just "black people", as everyone assumes of the Caribbean. The Indian culture in Trinidad is very deep rooted and indeed, they revere fairer skin and blonder hair over here as well.
I am as much in touch with my Indian roots as I am with my European and African roots. When, in my post, I said I was not attacking India, I meant it. I'm sorry you did not see that part of the post. There are problems with every race and there is beauty in every race. The image that Bollywood portrays of light-skinned Indian women is one that the world is familiar with, and even the Indian delegates for Miss Universe tend to be of a Bollywood calibre. It is the same here in Trinidad, we have had few Indian Miss Trinidad & Tobago's, and the few that we have had have been lighter skinned.
So please do not think that I am an outsider commenting randomly on something I know nothing about. There are many light skin conceptions in EVERY race, just because I made an example of India in my post does not mean I am disregarding or pepping all other races. I understand this upset you because you are of Indian descent and I apologize for that.
All the Best and God Bless
Darcel
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