Monday, October 5, 2009

How Does It REALLY Feel? - Part One

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: