Tag: vitiligo

The vitiligo update post

I’ll NEVER shave fully, because the beard offers protection for my upper neck.

vitiligo-1My spellcheck does NOT like the most prominent word in this post…

One of my ex-sisters-in-law wrote:

Hey Roger, I saw a recent photo of you and am wondering if you have vitiligo on your hands. I have it now and find that the sun stings me even with sunscreen. If you do have it, do you find that to be the same for you?

Yes, for over a decade. First posted about it here, and periodically since then.

This I can say: the lack of pigmentation, which is on my arms, legs, and face doesn’t bother me EMOTIONALLY as much as it once did. PHYSICALLY, though, it’s still a pain in the neck, sometimes literally so, if I don’t use sunscreen.

Thanks for the interesting information. I didn’t know about the possible liver connection. I’ve had it for about ten years as well. in my case, it seems to be related to the thyroid condition. I think the pattern of it is kind of interesting, but have trouble with my hands because of the difficulty of keeping them out of the sun.

The back of my hands burns as though I were a red-haired Irish schoolgirl. Quite vulnerable when I’m riding the bicycle.

Wow, I was hoping it was just the strong sun down here. I guess it will be that way just about anywhere.

I have no protection. MUST use sunscreen. I’ll NEVER shave fully, because the beard offers protection for my upper neck.
I did get it shaved back in 2013; I thought I looked hideous.

Me too (well, except for the beard). I try to schedule my outings for early or late to avoid full sun. I hate sunscreen, but use it when I must.

Yes, I was never a sunbather, but that’s not even an option. I do the timing thing. Those times I forget (usually on overcast days), I feel miserable later.

There’s a company called Sun Precautions that sells sunscreen and blocking clothes that you might like. It’s hard with the hands. I had some hand covers, but they didn’t work well for driving. I used a parasol too until it fell apart. I’ve been taking some medications that cause sun sensitivity as well. So it was handy …unintentional pun…
I am thinking of getting the travel size umbrella this time, There is a navy blue that might be better than the yellow one I had.

I probably ought to write about it again… I wear long-sleeve shirts in the summer, lest I burn. Usually wear long pants, rather than shorts. This may be unrelated, but I really NEED sunglasses on a sunny day.

Well, I learned something from what I just read. It’s good to inform other people, I think. I sometimes wear a scarf over my head an arms in summer and I’ve gotten some strange looks with that as well as the umbrella.

Better to look weird than get heatstroke.

Beard, or no beard: that is the question

This picture from the May 2010 does not look like me to ME.


Jendy, who I’ve only known since 1987, asked:

If you were to shave your beard, would Lydia recognize you? Would I? ([Paul [her husband] says his kids would do a double take every spring when he used to shave his off!)

I don’t get to see Jendy as often, now that she has a new job. When she worked in a public setting, I’d see her once or twice a month. So she didn’t know that, in fact, I DID have my beard shaved off, on the Saturday before Thanksgiving. It had become a scruffy mess, and I needed to get it trimmed. But once in the chair of a new barbershop, I let the whimsy of the moment carry me off, and had all the facial hair, save for the mustache, removed. Lydia seemed to recognize me, and I’m sure you would too.

Know who didn’t recognize me? I didn’t. Back in 2004, and before, I had a medium-dark complexion. (That’s me on the left in a picture taken in April 1997 for Bill and Orchid Anderson’s wedding.) Then I got the vitiligo, which, not only created lighter patches on my arms, hands, legs and elsewhere but generally lightened the skin on my face. And because I am afraid of sunburn, or skin cancer, even with sunscreen, I tended to avoid direct sunlight whenever I could. This made my face considerably lighter, to a point that I did not even recognize myself in photos. There’s one in my church newsletter from three or four years ago, in which the only way I knew it was me was seeing the outfit I was wearing. This picture from May 2010’s Free Comic Book Day does not look like me to ME.

It’s not just that I think I look better darker, it’s that it’s how I see myself in my mind’s eye. It’s not like realizing I’m grayer or heavier; it’s something much more fundamental that I cannot describe except that it was my SELF-IDENTITY.

Then, either I stopped worrying as much or something, because I guess I spent less time hiding under umbrellas in the summers, and some of the color has returned to my face, as you kinda can see in the picture below, taken in early February 2013. When I got the shave in November, I could see this odd streak of skin where my beard had been, lighter than my skin color in the 2010 pic. It looked WEIRD, freakish. I almost took a selfie, except that I actually had no idea where my cellphone was. So now the beard has returned, and while I’ll trim it, I doubt I will cut it off any time, certainly not in the near future.

This ties in nicely with a question by New York Erratic:

What’s your favorite weather?

Partly sunny, or partly cloudy, with high clouds filtering the sun. Never liked the direct sun, even as a kid. The heat index, that combo of temperature and humidity, starts bothering me at about 90F.

Not crazy about the cold at the post when the condensation on my mustache freezes. Don’t mind the rain, though I’d rather be indoors. Some snow is fine. I’d find San Diego weather boring.

S is for Sunburn and Skin Cancer

While my face has darkened somewhat from its vitiligo lightest, my hands and other parts of my body will still burn as though I were a red-haired Irish schoolgirl.

One of the things I have NEVER understood is the appeal of lying in the sun for the sole purpose of lying in the sun; seemed like a waste of time. Going swimming or playing a sport or working on a sunny day, that was OK.

As it turns out, while there is some benefits from the sun in terms of absorption of Vitamin D, the downside of too much sun is quite great.

* “Exposure to sun causes most of the wrinkles and age spots on our faces.” Years ago, visiting my sister in Southern California, I vividly remember seeing this woman at her church. Deep tan, presumably attractive, but her skin looked like shoe leather.

* “Skin cancer is the most prevalent form of all cancers in the U.S. and the number of cases continues to rise. It is the uncontrolled growth of abnormal skin cells. This rapid growth results in tumors, which are either benign (noncancerous) or malignant (cancerous).”

Think those tanning beds are safer? Not according to the US Federal Trade Commission, which notes that claims such as “Get a beautiful tan indoors without increasing your risk of skin cancer” or “Indoor tanning is safer than the sun because the environment is controlled” are myths. In fact, “compared with nonusers, the risk for basal cell carcinoma and squamous cell carcinoma increased by 15 percent for every four visits made to a tanning booth per year; the risk for melanoma increased by 11 percent.” High school and college-aged folks are more vulnerable than those 25-34.

Personally, I always wear hats, even on overcast days. The trick with this winter that wasn’t in the continental US – March was more than 8 degrees F, about 3 degrees C, warmer than normal, more like April – so while it cut down on our heating bills, it also had me needing to get out the sunscreen much earlier. While my face has darkened somewhat from its vitiligo lightest, my hands and other parts of my body will still burn as though I were a red-haired Irish schoolgirl.

So what song should I finish with? Beatles? Sheryl Crow? Bill Withers? Nah, someone I actually saw perform at my college, Jonathan Edwards singing Sunshine.

ABC Wednesday – Round 10

Made for the Shade

It’s not that it hurts me, or offends me. It just IRRITATES me – I can’t explain why.

Ah, June. Look forward to it less than I used to.

As I noted here, way back in 2007 and subsequently, I have a skin condition called vitiligo. After dealing with some weird socio-psychological stuff, I’m more or less OK with it. Most of the time.

I wear long-sleeve shirts almost all of them time when I’m going to be outside, even when it’s hot out. I seek shade. I wear hats. I use sunscreen on the cloudiest of days. I also wear sunglasses and shop at Pure Optical a LOT; don’t know if it has anything to do with the condition or merely aging, but I seem to be much more sensitive to sunlight than I used to be.

Still, I’m still tired of people – OK, there’s no getting around saying it, white people – coming up to me and pointing out that they are darker than I am, or at least the parts of me where the melanin has ceased to work on me. It’s usually my hands, particularly the back of my hands, that are the points of comparison. Happened to me a couple weeks ago.

It’s not that it hurts me, or offends me. It just IRRITATES me – I can’t explain why – moreso because it’s usually done by people I know, often by people I like. So if you happen to see one of your friends who are experiencing vitiligo and feel compelled to lord your tan over that person, PLEASE don’t. They may be smiling outside, but even money, you’re bugging them.

30-Day Challenge: Day 11-Recent Picture of Me

I don’t look like my sense of me.

This is a picture that a guy at church took of me in February.

I’m pretty sure I’ve told you that, as often as not, I do not recognize myself in photographs in the last two or three years, especially black and white pictures. This is because the vitiligo has lightened my face several shades, and in my mind’s eye, I don’t look like my sense of me.

There was a sermon recently in which the question posed was, “When you look in the mirror, what do you see?” I said to myself, “I DON’T look in the mirror all that much.” When I do, I see the the melanin trying to come back on my face in splotchy patches, and it’s constantly changing, depending on how much sunlight I get. It was annoying when this was happening on my arms and legs and feet a couple years ago, quite another when it appeared on my visage. It messed royally with my sense of self-identity.

I’m OK with it, but to suggest I was great with it would be a huge stretch. None of this should be construed as some sort of self-loathing; it’s more like a mild toothache, not bad enough to send one to the dentist right away, but enough to be aware of so that you don’t eat food on that side of your mouth.

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