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Wednesday, July 25, 2007

Michael Jackson's Disease

This is a post I've been avoiding.

And it's not as though I have some fatal disease, or even suffer any real physical ill effects at all. Every summer, when it first gets hot, I've been getting a little heat rash on my forearms for the last decade and a half, which usually goes away when my body acclimates to the heat. But for about the last 18 months, instead of going away, it just blanched out. I know my primary care doctor noticed it last July.

As it spread to my neck, legs and trunk, I got a referral to a dermatologist. But, of course, actually getting to a dermatologist usually takes a while. Meanwhile, it became very noticeable, to me, on the back of my hands. And this was the worst, for one sees the back of one's hands a LOT. The cliche became untrue: I no longer KNEW the back of my hands.


Anyway, a couple days before my last birthday in March, the dermatologist confirmed what I had long suspected: I have vitiligo. It is an ailment of the autoimmune system. It's not contagious. Though there is some correlation with some certain ailments of the liver, it's not causal, and in any case, I took a blood test to eliminate that possibility.

The dermatologist said if I were an 18-year-old girl, then there may be some aggressive topical treatments to suggest, but since I'm "mature", this would not be the game plan. He said I was mature? Oh, he's talking about my AGE, not my disposition.

And it's spread to my face, which I'd been really worrying about. But it's been more even there, with an almost complete lightening, except for some dark patches under my eyes, which are partially obscured by my glasses.

Here's the thing: when I started losing my hair, I wasn't that vain about it. Going gray didn't bother me. In fact, a few months ago, I got a bread trim and a hair cut, and more than one person said I looked 10 years younger. Interestingly, I didn't care, certainly not enough to change my behavior. That I weigh more than I did is largely under my own control.

This event, though, has gotten to me. It's mostly because it isn't a change that I was anticipating. Also, because of the patchiness, especially on the aforementioned back of my hands, I feel more than a little bit like a leper.

If you read the hyperlink above, you'll notice "How Can People Cope With the Emotional and Psychological Aspects of Vitiligo". This is relevant, because, for a while, and even now from time to time, it has really messed with my head. In part, it's because this ailment has become associated with some wacko pop star. In part, it's because I LIKE my brown skin, and it's been part of my identity for so long.

There are ways to hide the effects with makeup, but, bottom line, some days, it's really made me rather melancholy.

ROG

20 comments:

ADD said...

Roger,

Thanks for posting this, and good luck dealing with your condition. From the sound of things, "dealing with it" is the entirety of your doctor's game plan, which seems a bit lacking since, as you note, this does profoundly affect your sense of identity and self.

Have you looked into support groups? I'd ask if you feel you need counseling, but you strike me as grounded enough that therapy would probably be unnecessary?

It took some guts to post this, and I salute you for it. For what it's worth, you've got my support and continuing respect and admiration.

Alan

GayProf said...

So, only 18 year olds can care about their appearance? Maybe it's time for a new dermatologist...

Anonymous said...

Hi -

Just letting you know that my thoughts are with you.

S.

Anonymous said...

Hello Roger:

I have a family member with the condition. After a while, it just part of life. People who love you don’t see the disorder they just see loveable Roger the Big Teddy Bear they want to hug and smile with.

God Bless You.

Miriam

Gordon said...

Roger, my near-twin,

My thoughts and support are with you. I wish I could say, "Know what you're going through"...but in all honesty, I don't. The closest I've come is when I had a small melanoma removed from my shoulder some years ago.

Somehow, I doubt that equates with dealing with a change in appearance, as well as feeling as if you're a stranger in your own skin.

I commend you for sharing this - I doubt that, in a similar situation, that anyone else would have been as forthright and honest.

Anonymous said...

I just read the "skin condition" thing. I didn't notice a thing when we saw you last, and I don't care what colorS you are anyway. But here's an irony: When white people get vitiligo they only get whiter. Is that some kind of punishment? Like: You think white is good, huh? OK, you got it. Hasta la vista, SN

Anonymous said...

Oh Roger, I know the vitiligo must be upsetting! I have a female friend in canada, Deb, who started going through this recently. They think the onset may be tied to menopause, but perhaps that's the catch-all excuse for middle-aged women. Who knows. In her case, she has a light pink complexion, and the vitiligo is appearing as a darker red blotching. Like you, it started on her arms, then hands, and now face. She's taken to hiding her hands in public, and though she's never worn makeup, she's considering it now. She thought her doctor had said that it might just stop at some point, and perhaps even fade somewhat, depending on the condition of her immune system. Although, she admits that she was too upset to listen carefully to her doc. Have you heard the same thing?
LS

Anonymous said...

For pity sake, we love you anyway,well, i love you anyway. never noticed the vitiglio . well, don't look at the back of my hands they are beginning to look like my dad's at my age, my knees too or so my sweet son says. Now how's that for a bummer?
I aplogize for taking this lightly (no pun intended) which i'm not because it's how you feel, but just remember we love you anyway, All of life is an adjustment on a daily basis. In a little while you won't even notice or even give a hoot about it . Unless there's an ill feeling that goes with the immune aspect of this. , which i hope not.
Alice

Anonymous said...

can sympathize. My mother had that disease and my brother, Glenn, has it. I don't think it bothers him much but my mother was quite distressed until it had spread enough that the original skin tone did not show any longer on her face, hands and arms. I'm glad it's not dangerous but at best it can be annoying. Are any of the tanning sunscreens useful in diminishing the contrast?

Anonymous said...

ROG, sorry to hear this news. I can completely relate to your emotions. I don't know if I told you, but about 2 years ago I had Bell's palsy. Half my face was paralyzed briefly. Luckily I recovered (some people never do), but I can still see the effect somewhat, especially in pictures. There's also a chance it may happen again, which really freaks me out. I feel really vain when it upsets me, especially since it's not life threatening or dehabilitating. But your appearance is a huge part of your identity, and it is difficult to deal with the emotions. The only thing I can say is what helped me to cope --- You have every right to be rattled by the changes in your body, but know that really, truly you are that same person we love inside, and that's all that matters in the end.

T

Anonymous said...

My very dear friend -

While the condition may mess with your head at times, please remember that it is what is held within the skin that truly counts and you, yourself, are the inside not the outside. You are most precious to your beautiful wife and darling daughter and in a wider, broader sense very precious to many, many more of us. While the philosophical arguments of identity should not be discounted too far, neither should they be the primary reflection. (no mirror puns intended)

I have a friend here who just keeps getting whiter - she used to be more pink. :-) And as far as the whacko pop star goes, ehhh...fuhgedaboudit, he ain't worth tying your shoes! Although...could his head BE messed with any further....?????

In any case - we're all shades of some color outside and pretty much the same color inside!

Blessings,
Pat

Anonymous said...

Dear Roger,

I hear 'ya, my friend. I have Lupus and two successful battles with Cancer behind me. It has all brought changes I'd never have signed up for. But, oh, the lessons that have come in its wake. For them, nothing but gratitude.

I want to mention the lupus again. The minute I started reading your post, and before I got as far as the diagnosis, I started thinking "autoimmune". Check out www.lupusrecoverydiet.com. It changed my life
- got me out of the chair I couldn't previously get out of for 3 years.

I wish you the best, my friend.

May Miracles Abound.

Joyce said...

Dear Roger,

Autoimmune conditions are terribly frustrating, but I am confident that you will, in time, find out how to control yours. Please be assured that it bothers you a whole lot more than anyone else even notices it.

Joyce

cd said...

I've actually had vitiligo for quite a few years now. It started around my left eye in my early 30s (the lashes and brow also went partially gray). It hasn't progressed much.

I'm a pale white girl with freckles, so I now wear sunscreen daily, year round. Otherwise my skin gets darker, the freckles get darker yet, but the patch around my eye remains pale white. I end up looking like a calico cat.

Obviously the darker your skin, the more noticable the condition. When people have said things to me about Michael Jackson "bleaching his skin" to "look more white", I've explained to them about vitiligo and that I have it too. That anyone can get it.

I recall being tested for pernicious anemia, thyroid problems and some third thing--maybe the liver as you mentioned. All were negative. It's one of those diseases that can be indicative of something more serious, or it can just be on of those things. Good luck with it. And you'll always be a handsome devil regardless!

Anonymous said...

Dear Roger,

To say I am stunned would be just beginning to describe it. Yikes! It's no wonder you feel melancholy from time to time. You've obviously been dealing with the diagnosis quite well, though.

Anonymous said...

Hi Roger -
I am sorry to hear of your problems with your pigment changes and the effect it is having on you.
I have a neighbor - who is white - who started to notice her condition about 10 years ago. At first it wasn't so noticeable. Then sometimes it seemed more so. Regardless, she has always been a little - or more than a little -- self-conscious about it.
I guess I tell you that to let you know that you are not alone - or at least not alone with Michael Jackson - and that I understand how it can be a real struggle to deal with such a change.
I think the difference between this and balding or graying or getting overweight is largely a part of what is "usual," or "normal." That unusualness may draw more attention from others - for a reason we may not want attention for. In addition to us all wanting to look our best, I think the unusualness is part of the difficulty in dealing with this.
But the interesting thing about that is while my neighbor is quiet, pretty mundane (don't tell her I said that if you ever meet her!) and works at being "normal" - I have always thought of you as being unusual and interesting - and not particularly concerned with being "normal."
So - while I know I would have a hard time dealing with such a situation and I am sympathetic - I also want to encourage you to embrace this as all part of the new "you."
Your willingness to be the unabashed, charming you, be willing to be interesting and unusual, love yourself and love life has always been one of the things I have loved about you. So now you are just a bit more interesting and unusual - it's just a slight model change on the old Roger. Your could consider it a new, improved version, growing more interesting with age(?)
And its only a change on the outside - unless you let it change you on the inside.
You know plenty of people who have figured out how to just accept what life has given them, warts and all, and know you love and admire those that just plow through it and recognize what is important and let go of the rest. It's those individuals that people love the most for who they are and people don't really give a second thought to what they look like on the outside, because of who they are on the inside - and because they accept themselves for who they are. Those are the people we love to love the most.
You have always been one of those people to me.
Don't let this get to you. It is not worth it.
Lydia is worth it; Carol is worth it; your friends and interests are worth it; your health is worth it ...and all of them, that (including your physical and mental health) and us, rely on you to figure out what is really important to spend time being concerned about and what isn't.
Don't let it change the Roger I love.

I hope this doesn't sound too glib or lecturing....because I am concerned and understand and care....
and probably need someone to remind me about what's important once in a while too....and certainly would (repeatedly) under the circumstances you are dealing with.
I hope in some way this helps - because I do love you.

Judy

Anonymous said...

Take Care of those hands
I find specialists and naturopaths
better able to deal with special situations you are worth it

Much love
my brother.
ska

Amir said...

My some freinds are suffering from vitiligo and for this reason i have search about vitiligo, I dont agree with your dermatologist that for 18 years old people there is a tropical treatment and not for matue, I recently read two post on the blogspot one is about the treatment of vitilig by harvesting the autolog cell and other is abour testosterone gene. these two types of treatment are newly discover and I saw about dozen of different treatments for vitiligo on a vitiligo site, which have been using for many years.

Anonymous said...

i somewhat know how you feel. i'm thirteen years old, and i just found out that i have vitiglio. i've joined a washingtion area support group, and it's helping me. i told one of my friends at skool, and she told everyone else. now peple keep saying that i'm related to micheal jackson, but i hate explaining it so much to correct them.

Anonymous said...

I have vitiligo also and am middle aged. I use temovate cream and have had good luck with the pigment coming back. Its not much troube, apply it every day for about a month. It thins the skin and after you stop and the skin thickens again, the pigment comes back. Good luck!