BN Skin Deep Series: “The White Spot that Changed My Life” – Living with Vitiligo

BN Skin Deep Series is a 3 piece series which aims to provide an intimate account into the lives of people with various skin conditions (Vitiligo, Psoriasis and Albinism). The aim of this series is to create awareness of these conditions and help people both understand and appreciate the realities of living with these skin conditions. The follow up series on Psoriasis will be published next week.

My name is Ogo Maduewesi and I have a skin condition called Vitiligo, a very devastating disfiguring physical condition. The only way you can even begin to understand the effect of this disease is for you to imagine waking up one morning with a white splotch on the side of your face, arm, lip or just anywhere. Over time, the splotch enlarges and is joined by others on your hands, your arm pits, your head, your mouth, your belly button, even your groin, without having any power to choose where these splotches appear.

Sound like a bad dream? It’s actually the sort of thing that happens on a daily basis to the millions of Vitiligo sufferers globally, including Nigeria. The disease which causes people to lose some or all of the pigment in their skin had baffled medical researchers for years. However in April 2010 scientists confirmed that Vitiligo was an autoimmune disease (meaning the bodies own immune system turns on itself). This is the same disorder that plagued Michael Jackson and currently affects up to 1 -2 percent of the world population.

I started really thinking about what bothered me most about having Vitiligo back in 2006, after all, it is more of a cosmetic problem than anything else. Why worry about what other people think? When it has not changed who I am and the way God sees me. Vitiligo may have knocked us down but it hasn’t knocked us out! I guess my main worry with the disorder is that it puts a serious threat to ones physical appearance in a world which emphasises physical beauty above anything else. But I think another thing that bothers me the most is the level of ignorance about the disease in my own country.

What’s the noise about Vitiligo?

Vitiligo is one of the most psychologically devastating chronic skin diseases, with a major impact on both the sufferers and their families. Vitiligo is still today underrated and underestimated. Today there are dermatologists who minimize the impact of the disease, who trivialize the condition or deceive patients’ expectations, leaving them vulnerable to therapies not proven effective. Vitiligo is one condition that people do not really understand the impact, not only does it disfigure, its one condition that usually leaves it sufferers in misery, bondage and pains. People sometimes don’t realize how those living with Vitiligo feel, yet many experience various forms of self esteem issues when dealing with acne. Vitiligo is a condition that usually starts out of the blue. One day you are fine and then the next you notice a white spot which you ignore and before you know it many more spots appear.

Types of Vitiligo

Vitiligo generally appears in one of three patterns:

• Focal pattern, the depigmentation is limited to one or only a few areas.

• Segmental pattern, some people develop depigmented patches on only one side of their bodies.

• Generalized pattern, but for most people who have vitiligo, depigmentation occurs on different parts of the body.

Apart from the obvious visual effects, those who suffer from the disease also have considerable emotional and physiological effect such as social stigmatisation, segregation and general ridicule from people who don’t understand what it feels like to live with this disease. Our society still does not understand exactly how hard it can be for one to struggle to live positively in the midst of trials, challenges & difficulties such as Vitiligo.

Vitiligo has left people rejected by their loved ones, destroyed beautiful relationships because of lack of understanding and yearning for physical beauty. Women are more vulnerable to this as we live in a society which more often than not exalts the physical needs of the man above the emotional challenges of the wife.

Recently I heard of a story were a fellow female Vitiligo sufferer, who had been in a relationship with her boyfriend for over 10 years was on the verge of committing suicide. Her reason, her so called boyfriend who had practically been leaving off her had the nerve to ask her in the presence of her mother, why she thought he would marry her when there were plenty of ‘patchless’ women around. The lady in question was inconsolable, she kept asking me how she could possibly find love with her condition?

Even married women are not exempt from the social stigma. Many of my married friends who suffer from Vitiligo have told me how difficult it is to only be able to wear long skirts all their lives.

Positive Attitude towards Vitiligo

I think I have gotten to a point now where I have made up my mind to stop thinking about Vitiligo or what people think or how they react to me. I realized I have enough inner strength to over come any form of negativity. Vitiligo is not something I brought on myself’ neither there is there any known cause nor cure let alone prevention. So I have decided to have a positive outlook and pray every depressive thought out of my mind while approaching any issues I may have constructively.

Today I realize that I have to live with Vitiligo (though I believed from the first day that it’s temporal) and even though I still get rude stares I don’t let it bother me. Instead I see those people as the ones with issues and not me. Everybody faces rejection at some point in their life, even beauty queens and celebrities. For me its not so much about what the society expects one to look or act like but more about living to please myself and for my own happiness and not to keep struggling to meet everyone’s else’s standard.

I have experienced a new found freedom in living for myself. Loving and accepting who I am without the unnecessary pressure of what people expect me to look like. Previously Vitiligo dictated what I would wear and where I would go, now things have changed. I wear what makes me feel comfortable and go anywhere I want. I have learnt that self acceptance is key!

But most of all I thank God I have something that keeps me busy. The truth is I rarely remember that I have Vitiligo. Rather I am more concerned about other Vitiligo suffers out there who are finding it hard to cope with the emotional and psychological effects of the disease, especially women.

My advice to other Vitiligo sufferers out there and others who maybe going through other forms of personal challenges is that nothing can bring you down without your permission! Remember that everything in life happens for a reason and that we never really know when the happenings are positive or negative. Sometimes events that are seen as negatives are simply lessons in disguise. There is always a positive & negative side to any situation but only you can choose what side to focus on.

Today some of us have chosen to come to brace our fate and conquer the various challenges we face by giving hope and creating the desired awareness to deal with the general public ignorance. This has given the birth to the Vitiligo Support and Awareness Foundation (VITSAF) www.vitsaf.org. We strongly recommend that you have a look at the website, like they say no knowledge is lost. And please pass along the details of the site and organisation to your friends and other Vitiligo suffers you may know.

Download a PDF version of our Skin of Color & Appearance publication from our website homepage www.vitsaf.org. Also join our facebook group ‘Vitiligo in Africa’ for all you may want to know.

Photo Credits: www.medscape.com