Too much Internet is a bad, bad thing.
Normally, I don’t write about really personal things. I mean sure, I talk about Steve and Harry, and post pictures of the house and all that–but I tend not to write about work, or very personal issues.. So this post is an exception, and you are forewarned that it’s personal and also very long. I’m still a little freaked out, but it’s a more controlled freak out because I know exactly what is going on, and have a clear course of action.
A couple of months ago, I was shaving my, uh, nether regions, and noticed there were some white patches of skin. I thought it was really weird, but I was super busy work-wise, and I meant to look it up, but didn’t. Then, two weeks ago, I was running out to a client meeting. While I was brushing my teeth, I couldn’t remember if I had put on deodorant, so I raised my arms to check in the mirror. “Wow,” I thought. “I put on way too much!” Rubbed the white patches and they didn’t come off.
I got in a car and called Steve in total freak out mode. He interrupted me when I started telling him about the nether region patches. “Oh you’ve had those forever. You have some under your arms too.”
“Were you planning on telling me this?” I asked. “How long have they been there?”
“I just figured it was another one of your skin weirdnesses and didn’t want to get you all paranoid.” Much as it pains me to admit, he’s right on both accounts: 1) I have weird skin stuff; and 2) I am a complete hypochondriac. So when I got home, I made an appointment with the dermatologist. For the record, on the question of how long they’ve been there, he wavers between “since we’ve been together” and six months. Typical guy.
But then I noticed a patch on my face.
It wasn’t white–but it was definitely paler. Is it my imagination? Is it really there? Is it exactly like the other patches, or could it be something else? What about that red circle around it? And those bumps? So I started in on the Internet research.
I’m good at research. I love research. And I’m also on the computer all day long. At home. Alone. Where I have ample opportunity to imagine the worst. Before long, I was convinced I had both vitiligo and lichen scleroma, but was hoping that it was systemic tinea versicolor–not that the systemic part exists, but one can still hope, right? And my doctor’s appointment was still two weeks off. Then, I met Steve up in Victoria and we spent the day walking around in the sun. The next day, in a client meeting, I excused myself to go to the bathroom and while washing my hands started fixating on the light patch on my cheek.
And then I noticed that the areas above my eyebrows were sunburned.
“Of course, they’re redder,” scoffed Steve in an attempt to comfort me. “They stick out more.” The countdown to my doctor’s appointment began in earnest.
Still hoping that it was tinea versicolor, I started applying an antifungal lotion on my face. They just kept appearing. I hoped against hope that it was the versicolor thing, but I knew different. It was vitiligo.
I was bordering on hysterical. In the course of the next week, I went through all the stages of grieving–including acceptance once I realized that pretty much anything can be covered by makeup. And there’s specific makeup for this. The fact is, I spend less time on makeup than any other American woman alive, so who cares if I need 10 extra minutes every morning.
Meanwhile, I missed my hair appointment and my grays kept on growing in grayer. (I’ve been going gray since I was 25; my grandmother was completely gray when she was 35.) I was examining my head in the mirror, and noticed a patch of white. And then it seemed to me that my hair was thinning. Like seriously thinning. Alopecia (I had a bout of alopecia areata my early 20s) and vitiligo can go hand in hand. Never mind that Steve insists it’s been like that forever. Now there’s more Internet research. And there’s more hysteria.
So in other words, the last two and a half weeks have been absolutely terrible. I haven’t been able to concentrate on anything. I had my appointment this morning. “I didn’t shave my armpits,” I explained, “so you could see that some of the hair is growing in white.” I didn’t even have my shirt off when her ears perked up at the mention of white and she said the dreaded word: “Vitiligo.”
I knew it.
But all is not lost. It’s all over my face–but it’s also early in the game (which means it’s just paler–you can only really see it up close). There are treatments. So we’re starting with Protopic, and she seems to think that repigmentation is more than likely. There are other, more aggressive treatments if the Protopic doesn’t work. And there’s always makeup. After the past couple of weeks, just knowing for sure makes a huge difference.
And there’s nothing wrong with my hair, except for the fact that I’m 33, not 23.
Comments
I have a student who has vitiligo. She is a really good writer. So now I’m thinking there is probably some genetic link between this and good writing….I had never heard of this until six months ago, and now I know two women who have it.
Hope you are getting over the stress…and that this won’t affect life too much for you.
Oh Cynthia, thank you so, so much for that comment. You made me smile and even get a little teary.
One of the best things about being a writer is that the thing in life that may seem as a setback at first usually proves to give you a kind of edge or advantage at time. It deepens your understanding of the bigger world; at the same time, it makes you more deeply yourself.
I have a condition, empty sella syndrome, that nobody’s ever heard of. Even before the internet, I was such a research hound that I knew I had it 20 years before the drs would agree with me.
I hope everything is controlled and okay with your empty sella syndrome. It’s funny that you mention the personal ramifications, because when I was going through the 2 weeks of Internet tormenting myself, I had this mini ephiphany that I have spent so much time being self-conscious about weight, blotchy skin, and whatever the issue du jour is. I feel like I’ve been wasting all this time–and you put it beautifully. It does make you look at the bigger world and centers you. I was walking his royal furriness last night, and I didn’t even listen to my mp3 player podcasts as I normally do: I was too busy loving the world.
I’m fine…just some weather-related headaches sometimes, and msg makes me really, really sick. But it was a 25-year foray into the world of medical misdiagnoses and misinformation. For that reason, there is no such thing as too much internet research re. medical info. You have to be proactive, and you have to read the research available via Index Medicus, because the docs are mostly relying on the lies that the pharmaceutical reps are dishing out w/ the free samples and the bribes and the Caribbean cruises. Seriously.
Hi Zia! It’s me..Ewa from Kana.. I hope my presence here will not upset you..It’s just that miraculously I came across your website by accident and was thrilled to find out it is YOURS!!!!!! I was sorry to learn you have been going through such a difficult time lately … I do wish you all the very very best and I hope you will get over this enormous stress soon…Please forgive me I am being such an intruder here, posting a comment which you may not see welcome at all.. I just wanted to say I will keep my fingers crossed for your well-being and am sure you will be full of positive energy again in no time!… One more thing: I wish I could learn English from your book-review-posts…. I loved reading some of them! You are a genius writer! I keep my own blog (to let off the steam, some sort of autotherapy, you know…It’s mostly in Polish but sometimes I like posting some “whispers” of mine in English.. (http://iwaly.blox.pl) Being able to “scream” or “sigh” in the anonymous web sometimes it helps me through the darkest spells in my life. Anyway, I hope you don’t mind I dared to trespass on your kingdom here… Please don’t… Take care please!
Zia, you will be able to cope with this. Facing challenges like this makes you strong. I’m thinking about you!
I just want to say, thanks for sharing your experience. You are a great writer, if that helps…
Index medicus … thanks Cynthia, I’ll check it out. I’ve already decided that I am going to a naturopath to see about the whole holistic approach.
Ewa, welcome to the fray! Glad to see you here. And Becky and LK, thanks for your support. It means a lot. I’m not in total freak out mode anymore, but I’m still finding myself getting a bit upset. We are such vain creatures, aren’t we? And really, the white spots on my face are definitely there … but they’re not that noticeable (yet) unless you’re really looking. And can I just say that the person who invented the magnifying mirror just needs to be SHOT?
Oh, Zia, I hope you won’t fret too much. But I know (dealing with serious premature hair-loss issues myself) that it’s impossible not to think that something like this is the first thing people notice. But even if it were true, which I suspect it isn’t, the state of your skin is certainly not what they will remember. You’re far too interesting for that
Thank you so much for your nice comment.
We spend so much time stressing over these things … and it’s not the current state that we stress over, it’s what we imagine it’s going to progress to that is so worrisome. At least me: Is that what you’ve found?
I think the thing that I feel most acutely right now–and I’m sorry to keep harping–but I somehow feel like my body has betrayed me. It’s doing something I can’t control. Everything else seems like it’s controllable. I suppose it’s just part and parcel of getting older. I was talking to my mom, and she said she had that realization when she was about 30. She hadn’t ridden (she’s an equestrian) in a long time, and she was out riding. Her horse bolted, and she KNEW how to stop him, but somehow her muscles didn’t work. The horse stopped suddenly in front of a hedge, she got thrown–and the horse went running into the road and got killed by a truck. When I said I had never heard that story, she said that she never talks about it; it is too upsetting. But it was then that she realized that you can’t always count on your body. I guess we’re both lucky; what we have is not fun, but it’s not life-threatening either.