I had my fears as a young girl in school. I noticed part of my skin was beginning to be eaten by something invisible at around the age of 7. It was rather not decided which parts of my body it would devour first. It started with my lips leaving them with a pink lining which to be honest I felt was rather ‘cute’, then later the invisible enemy would splash its weapons to my hands leaving them with discolored little patches spread out. I remember going to my parents concerned that I was sick but they didn’t really show concern. Felt like they had signed a memorandum of understanding with the enemy and did not want to fail on their part, but I later got to understand that they also did not understand what was happening to their sweet child. My mother must have mumbled things along the lines of ‘you are going to be fine‘ but that was as far as it would go. I was not taken to hospital either and I soon gave up too. The beauty of being a child!
In my primary 3 (or grade 3), I remember students reporting me to the teacher that my lips where red because I was drinking waragi (whisky) behind the toilet. (Imagine the shock in my eyes). I wept when the teacher summoned me for questioning partly because I was angry and embarrassed that I could be associated with liquor at such an age let alone waragi for this case, but also I couldn’t explain why my lips were red or rather pink. The events of what happened after seem to be faint but I guess the case died a natural death and life had to continue. Two years after this incident I started seeing the discoloration (white spots) spread to my hands and feet and this time I gathered enough courage to ask my mother what was happening to me. She told me I was born with them just that I had never seen them but it’s not sickness. (aren’t all mothers geniuses with their responses?) For some reason just like the first time I went to them when I was younger, I believed her after all it was mother who had said, even when I was sure that my hands and feet did not have these spots earlier so I stopped worrying that I was sick. The discoloration was most pronounced on my lips but it always looked nice so it was a bonus for me unless I had any ailment, these were the rare cases it would hurt and turn red- I guess because there’s no melanin so it was very sensitive.
Overcoming vitiligo as an insecurity I can confidently say came in high school when I was around 15 years of age. I made friends with a very spirited girl with whom I lived my best life with. We celebrated, loved, ate, studied and cried together. From her I got to understand and appreciate my worth as a young beautiful girl despite what anyone said. She was my ride or die, fought and attacked whoever tried to come at me. It was by her guidance that I got to read about vitiligo and discovered that it is something that I had no control over or change but could use it to compliment myself. I started to see it as something normal like having black hair as the other has blond hair. This does not mean that bad and hurtful things stopped coming to my doorstep. I will give you one last example.
In my senior 6 vacation, I escorted my mother to hospital and a doctor insisted that I be checked for HIV, “there’s no other reason why your lips are pink.” the doctor said. “It has to be AIDS“. My mom agreed and I also believed in the moment I was HIV positive and started imagining all the painful stories I had heard about AIDS victims. The results came that very day and of course I did not have AIDS but these are the challenges we often face.
Very many years later I am now a married woman and will soon be a mother to children of my own. The questions that linger are how far this could spread. Remember vitiligo is affected by external triggers like stress which can influence its progression. About two years ago while in hospital treating an ulcer attack, my physician asked me if I knew the condition I had when he saw the white spots in my hands and feet to which I responded that I did. He told me that this was bound to spread when I get pregnant, so now that I am looking forward to that season not so far from now, I continuously wonder how I will look while pregnant, or if what the doctor alleged was true in the first place.
But hey! it is true what they say, we shall cross that bridge when get there, for now I continue to live my best life.
As told by someone with vitiligo
