Nom de Plume

I think the hardest thing about vitiligo is not knowing how it’s going to progress. And coupled with my general paranoia, it’s hard to know what’s really fading and what’s my imagination. It seems to me that it’s spreading on my face and getting whiter–but it could also be more sun (I went white water rafting on Friday and even though I am very careful to wear sunscreen, still soak up sun). Steve says he doesn’t notice it, that I’ve always been this blotchy, but I don’t know. I think it’s worse. Also, his idea of support–bless his heart for trying–is to deny that it’s a problem. I teeter between sheer relief that it’s mainly noticeable to me and anger that he refuses to see that this is a real condition. But he tries, and that’s one important thing. And it doesn’t bother him in the slightest, and that’s another. I can see clear as day how this might affect our relationship–not the vitiligo itself, but how I feel about it and myself. Yesterday, he saw me putting on makeup and asked why I didn’t just let my skin breathe on the weekend. I told him that I hate looking in the mirror without it. He staunchly said, “It doesn’t look any different to me.” What’s not to love about a partner who does this? (And who hooks up the kitchen faucet and reconnects the dishwasher to boot?)

Vitiligo affects 1-2% of the population, and it affects all races equally. It’s just more noticeable in darker skinned people. I’m fortunate that I am not super dark. Even so, if it affects 1 or 2 people out of a hundred, why is it that I don’t encounter it more often? I remember seeing some people in India years ago with it, and I had an African-American professor in college who had some patches on his hands. But that’s pretty much it. People are coming out of the woodwork though; whenever it’s mentioned, people mention someone they know who has it. My neighbor Nicki came home from her weekend in Portland and told me, “My friend has what you have!” Her friend told me to contact her if I need support, and that’s been wonderful. I should probably go to a support group, but I don’t know if I’m up for that yet.

There are spokespeople for everything. Breast cancer. Prostate cancer. Incontinence. Impotence. Why are there no spokespeople for this thing? The closest we’ve come is Michael Jackson, and let’s be frank: He’s not a good representative of normal people who live with vitiligo. He’s not really a good spokesperson for anything. It’s sad that he’s done so much to himself that people question whether he really has vitiligo and chose to depigment himself because it was so severe or just wanted to be white.

This is not a pitiful post, begging for sympathy. Even though I know that this is something I’m going to have to live with, I’m not going down fighting. To be honest, I really like my dermatologist, but felt she was abrupt. She did have me tested for thyroid stuff because about 20% of vitiligo sufferers also have autoimmune thyroid conditions. The test was fine–but I’ve also read that vitiligo sufferers can be low in B vitamins and copper. Vitiligo can be a sign of pernicious anemia, which can prevent absorption of vitamins and minerals. There was a very small study that showed that gingko biloba can help slow the progression. Anyway, the medical approach seems to be to treat the symptoms, so I went to a naturopath last Wednesday. On Thursday, I went to give blood and urine samples, and they’re testing everything. I should be able to go back in a few days to see what the results are. I know it is really perverse to hope for odd levels of vitamins or whatever, but I do.