vitilinote .02 - acceptance

Turns out having vitiligo isn't the worst of all, it's not as bad as I thought. Yes, I have spots, but I'm healthy - it's not worse than seeing your child is sick for days. So, from that point of view, yes I'm in a good phase. I'm having it and I'm okay.

For a year now, I've been going to two different doctors, in Indonesia and in UK. They both gave me ointment (protopic) in which they suggest to put on all my white spots everyday. Blame my ignorance, I only put it on my face, because I find it too troublesome to put it on my hands, knees, and toes - since it's quite a lot now and I have to touch my toddler regularly. Not that I don't want to heal, but I've came to a conclusion that it's almost impossible to cure these much of spots, so I just let it be. I've accepted the fact that I'm living with spots.

I read a book few months back about vitiligo (I posted it here), and I found one name in the book. She shares her story of having vitiligo and she lives in Singapore. So, I contacted her and she was a very nice lady. She shared a lot of information about her treatments and what she had tried previously (she'd tried a lot!). We kept in touch for quite a long time, she even introduced me to another vitiligo survivor. She shared about her UVB treatment at Singapore Skin Center (including the bill!) and how it helps her to keep her spots not spreading. I'm so thankful that although my journey isn't that long, but so far, I've met several supportive mates (yes, that includes my husband and families).

I tried to ask for UVB treatment from UK's hospital, but seems like my vitiligo isn't that excessive that it needs UVB - I guessed I'm just not eligible for the treatment. I asked the doctor whether I could buy my own UVB light for home-used - I read that many people buy their own UVB light to be used at home - she said it's not recommended. Since people with vitiligo are prone to skin cancer, UVB light can harm the skin when it's being used unnecessarily and unsupervised. So, I'm planning to go to Singapore Skin Centre and looking for a second opinion.

I've just got an idea to put my vitiligo journal here, for public reference, in case people who just discovered this disorder needs more information. It will not be an expert opinion of course, I will only be able to share my own point of view - to encourage others that this is not the end of the world. I do know that it's not easy, it's like a nightmare in the beginning and everyday you hope you will wake up any minute. But, over time, it will be okay. Just breathe and hang on there. It's okay, we've got you. Find a person to talk with, you are welcome to cry. Find a doctor or an expert to tell you the truth, that take this thing like a normal stuff and you don't have to be pitied - because we don't, we are what we are and we are as normal as we were.

a sketch I did, during my "dark" phase. I was so frustrated in the beginning of my stay in the UK. My skin was getting so dry because of the climate change, and more spots I found every day. Was so heart-broken. My husband saw this sketch, and he was as broken hearted as I was. He encouraged me and assured me that it will be okay, no matter happens.

A few weeks later (or months - I forgot the exact timing), I did this sketch. It's for myself, to remind me that nothing would help me, if I don't help myself in the first place.

Acceptance is the key. Because it's okay to be spotted.

Don't forget to smile, everyday.


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