Re: Body Dysmorphic Disorder

May 13, 2000

I went through a period where:

- My nose and cheecks would become VERY painful and swollen after

going out in winter. My cheeks would sting for at least 4 to 8 hours

after going out in cold, windy weather and my nose would throb, like

someone had punched it, for a couple of hours.

- Showering and washing my hair caused a full facial flush and my

skin remained irritated, red and painful for the rest of the day.

- I could not let ANY sun on my face - and could not wear a

sunscreen.

- Any form of exercise brought on a painful flush and swelling.

- I developed a fear of going red.

With such a constant reminder of my illness (pain, appearance, the

altering of my lifestyle to avoid triggers), how could I not become

desperate and interested in finding a cure ?

I am now much, much better thanks to PhotoDerm and a number of other

treatments / techniques that have been posted to the list (most by

Dr. Nase). To say that cea is a cosmetic disease is totally

untrue. Many patients on this board were on constant painkillers

until undergoing PhotoDerm! Some have lost jobs / relationships...

For what it's worth, Dr. Nase only decided to go public with his

success story (*before* publishing his book) because two people he

knew with *chronic* flushing rosacea committed suicide.

For what it's worth, I suffered from ME (after glandular fever) as a

child (yes, yes, another non-fatal disease), but in terms of quality

of life being ruined, I went through a period where the pain /

discomfort of rosacea was far worse.

As I see it, rosacea is a very real physical / painful disease that

can cause mental scars as it progresses.

Rant over,

.

> DSM IV Diagnostic Criteria for Body Dysmorphic Disorder 300.7

>

_____________________________________________________________________

>

> A. Preoccupation with an imagined defect in appearance. *If a

slight

> physical anomaly is present, the person's concern is markedly

> excessive.

>

> B. The preoccupation causes clinically significant distress or

> impairment in social, occupational, or other important areas of

> functioning.

>

> C. The preoccupation is not better accounted for by another mental

> disorder (e.g. dissatisfaction with body shape and size in Anorexia

> nervosa).

>

> In my readings of the various posts, it is obvious that an

awareness

> of one's rosacea brings about a strong desire for attenuation if

not

> cure. This is a natural response to illness. However, I find it

> amazing how impacted some sufferers are psychologically and

> socially. The post about not wishing to have children due to the

[etc...]

May 13, 2000

Some of the people who post on this site are more traumatized by rosacea than

others. Those of us who are able to manage it should not be condescending or

insensitive toward those who are having a worse time. This is a support

group. By definition, this means that we are supposed to be SUPPORTIVE.

It is blatantly obvious and logical that people with a potentially

disfiguring illness would want to complain from time to time and would want

to do what they can to make their situation better.

If you don't like what you read here, I'm sure there are other e-groups you

can join instead.

May 13, 2000

Thanks for your perspective, but I have to disagree. Although there

is some truth to what you may be saying I find your opinions smug and

condescending.

I can't speak for anyone else on this board, but my case of rosacea

became extremely severe in a very short period of time. Perhaps you

have had most of the symptoms encoutered by the memebers of this

group, but I found myself with a face that was grossly swollen, red

and on fire. I was prescribed vicodin because the pain was so

intense that I couldn't sleep for more than about 45 minutes, even

with a fan blowing cold air on me. I couldn't eat - chewing caused

inflammation and burning. I couldn't shower, sit down, bend over, go

outside, shall I go on? I had to go on disability for 4 months and

had every possible medical test out there at several excellent

medical establishments, including Stanford, UCSF, and 2 Mayo clinics

locations only to find rosacea.

Thanks to photoderm, I have my life back. I am working, I can eat,

sleep and shower without feeling burning pain and swelling. I don't

really like to talk about it too much, but feel I need to when

someone underestimates what this disease may be like for some,

although not all of us. Yes, perhaps I will not die from this, but

being alive and not having a life was more traumatic for me than not

living. It had a dramatic effect on me, and my family. So please,

do not downplay the severity of this disease for others than your own

self.

Meg

> DSM IV Diagnostic Criteria for Body Dysmorphic Disorder 300.7

>

_____________________________________________________________________

>

> A. Preoccupation with an imagined defect in appearance. *If a

slight

> physical anomaly is present, the person's concern is markedly

> excessive.

>

> B. The preoccupation causes clinically significant distress or

> impairment in social, occupational, or other important areas of

> functioning.

>

> C. The preoccupation is not better accounted for by another mental

> disorder (e.g. dissatisfaction with body shape and size in Anorexia

> nervosa).

>

> In my readings of the various posts, it is obvious that an

awareness

> of one's rosacea brings about a strong desire for attenuation if

not

> cure. This is a natural response to illness. However, I find it

> amazing how impacted some sufferers are psychologically and

> socially. The post about not wishing to have children due to the

> fact that the child might inherit rosacea really epitomized this

> finding. That statement indicates that the writer truly believes

> that life is not worth living if they must endure occasional

> flushes/facial pain and minor cosmetic defect. When I was

diagnosed

> with rosacea, I was quite relieved, and considered it a best case

> scenario before my biopsy results were back. I believe that this

> site is invaluable to those diagnosed with rosacea, however, I've

> also noticed that many seem to be quite obsessed with their

condition

> and may meet the above criteria for Body Dysmorphic Disorder. When

> one devotes all of their free time and money to treat this (in all

> honestly, minor cosmetic) disease process, it is obvious that their

> psychosocial functioning is impaired. Treatments are available

which

> may better quality of life.

>

> M Burock, MD

>

> P.s. I have experienced every symptom reported on this site

> personally, including the neuralgia, flushing, telangiectasia,

> pustule formation, and ocular rosacea. However, I will take a

> diagnosis of rosacea over practically every other possible

> diagnosis. No one has ever died from rosacea, ever..

May 13, 2000

and Meg,

I couldn't agree more. I was devastated when I was first diagnosed with

rosacea, but eventually during the past few years, the constant physical

pain in my face far outweighed the cosmetic aspect of this awful disease.

For some it is disabling.

Jen

> - My nose and cheecks would become VERY painful and swollen after

>going out in winter. My cheeks would sting for at least 4 to 8 hours

>after going out in cold, windy weather and my nose would throb, like

>someone had punched it, for a couple of hours.

>

> - Showering and washing my hair caused a full facial flush and my

>skin remained irritated, red and painful for the rest of the day.

>

> - I could not let ANY sun on my face - and could not wear a

>sunscreen.

>

> - Any form of exercise brought on a painful flush and swelling.

>

> - I developed a fear of going red.

>

>With such a constant reminder of my illness (pain, appearance, the

>altering of my lifestyle to avoid triggers), how could I not become

>desperate and interested in finding a cure ?

>

>I am now much, much better thanks to PhotoDerm and a number of other

>treatments / techniques that have been posted to the list (most by

>Dr. Nase). To say that cea is a cosmetic disease is totally

>untrue. Many patients on this board were on constant painkillers

>until undergoing PhotoDerm! Some have lost jobs / relationships...

>For what it's worth, Dr. Nase only decided to go public with his

>success story (*before* publishing his book) because two people he

>knew with *chronic* flushing rosacea committed suicide.

>

>For what it's worth, I suffered from ME (after glandular fever) as a

>child (yes, yes, another non-fatal disease), but in terms of quality

>of life being ruined, I went through a period where the pain /

>discomfort of rosacea was far worse.

>

>As I see it, rosacea is a very real physical / painful disease that

>can cause mental scars as it progresses.

>

>Rant over,

>

>.

>

>> DSM IV Diagnostic Criteria for Body Dysmorphic Disorder 300.7

May 13, 2000

I think we would all agree with Dr. Burock that, regarding many people in

this group, <<it is obvious that their psychosocial functioning is

impaired>> . I know many of us, including myself, have been greatly impacted

by the disfigurement of rosacea.

Dr. Burock is, however, dead wrong in attributing this reaction to Body

Dysmorphic Disorder. His own definition says that disorder is a <<

Preoccupation with an imagined defect >> There is nothing IMAGINED in our

red and hurting faces. My psychosocial reaction to this has been perfectly

normal and healthy, thankyouverymuch.

He refers to my face as a << minor cosmetic defect >> ?!?!? Nothing

minor about it. I literally look like I have measles in large patches all

across my face and down both sides of my neck. I lived happily without

makeup for almost 47 years. I began wearing it only to cover what definitely

is NOT a << a slight physical anomaly >>

As for Dr. Burock's arrogance.... I believe I recall him introducing himself

as recently getting his MD? He'll learn. But he might want to consider

going into a research field as he doesn't seem to have much natural empathy

for the suffering.

Carolyn

May 13, 2000

I suppose some people could develop an " obsessive " preoccupation with their

cea, but I myself have at times experienced much discomfort due to it's

symptoms. When your face bleeds whenever you as much as try to wash it and

your eyes water continually, because of irritation, it's hard not to feel

bad about it.

In a world where people are (unfairly) judged by their appearance, it's a

sad but true fact that we with rosacea are going to feel bad about ourselves

at times. Maybe you have never had someone ask you if " what you have is

contagious " , or come up to you and say " gee, you have a bad sunburn, that

looks painful " , or had them make a joke about you being an alcoholic, but I

assure you, it will make you feel bad about yourself.

I agree, no one has died from cea. But to minimize the emotional toll is

very cold and unfeeling. I certainly hope you aren't a dermatologist,

because I would pity the patient who comes to you looking for treatment.

Cyd

Body Dysmorphic Disorder

> DSM IV Diagnostic Criteria for Body Dysmorphic Disorder 300.7

> _____________________________________________________________________

>

> A. Preoccupation with an imagined defect in appearance. *If a slight

> physical anomaly is present, the person's concern is markedly

> excessive.

>

> B. The preoccupation causes clinically significant distress or

> impairment in social, occupational, or other important areas of

> functioning.

>

> C. The preoccupation is not better accounted for by another mental

> disorder (e.g. dissatisfaction with body shape and size in Anorexia

> nervosa).

>

> In my readings of the various posts, it is obvious that an awareness

> of one's rosacea brings about a strong desire for attenuation if not

> cure. This is a natural response to illness. However, I find it

> amazing how impacted some sufferers are psychologically and

> socially. The post about not wishing to have children due to the

> fact that the child might inherit rosacea really epitomized this

> finding. That statement indicates that the writer truly believes

> that life is not worth living if they must endure occasional

> flushes/facial pain and minor cosmetic defect. When I was diagnosed

> with rosacea, I was quite relieved, and considered it a best case

> scenario before my biopsy results were back. I believe that this

> site is invaluable to those diagnosed with rosacea, however, I've

> also noticed that many seem to be quite obsessed with their condition

> and may meet the above criteria for Body Dysmorphic Disorder. When

> one devotes all of their free time and money to treat this (in all

> honestly, minor cosmetic) disease process, it is obvious that their

> psychosocial functioning is impaired. Treatments are available which

> may better quality of life.

>

> M Burock, MD

>

> P.s. I have experienced every symptom reported on this site

> personally, including the neuralgia, flushing, telangiectasia,

> pustule formation, and ocular rosacea. However, I will take a

> diagnosis of rosacea over practically every other possible

> diagnosis. No one has ever died from rosacea, ever..

>

> --------------------------------------------------------

> Please read the list highlights thoroughly before posting to the whole

group. see http://rosacea.ii.net/toc.html

>

> When replying, please delete all text at the end of your email that isn't

necessary for your message.

>

> To leave the list send an email to rosacea-support-unsubscribeegroups

>

May 13, 2000

In a message dated 5/13/00 4:39:30 PM Eastern Daylight Time,

meg.edelson@... writes:

<< Thanks for your perspective, but I have to disagree. Although there

is some truth to what you may be saying I find your opinions smug and

condescending.

>>

I think perhaps as a doctor he has seen more misery and suffering than any of

us shall ever see. I'm not sure " smug " or " condescending " is a term I can

use since I haven't experienced what the doctor has.

May 13, 2000

In a message dated 5/13/00 6:45:45 PM Eastern Daylight Time,

leugene@... writes:

<< Maybe you have never had someone ask you if " what you have is

contagious " , or come up to you and say " gee, you have a bad sunburn, that

looks painful " , or had them make a joke about you being an alcoholic, but I

assure you, it will make you feel bad about yourself. >>

All you can do in such an instance is tell them the truth. Someone on one of

the skin care boards make an uncalled for remark to a girl posting about her

red face and vein problem. And I answered her very frankly that she was

apparently ignorant about rosacea and her coments were uncalled for an could

be rather hurtful to someone else.

May 13, 2000

It seems that you are exhibiting transference here. Could it be that

you suspect you have Body Dysmorphic Disorder?

Matija

>

> Body Dysmorphic Disorder

>

> > DSM IV Diagnostic Criteria for Body Dysmorphic Disorder 300.7

> >

_____________________________________________________________________

> >

> > A. Preoccupation with an imagined defect in appearance. *If a

slight

> > physical anomaly is present, the person's concern is markedly

> > excessive.

> >

> > B. The preoccupation causes clinically significant distress or

> > impairment in social, occupational, or other important areas of

> > functioning.

> >

> > C. The preoccupation is not better accounted for by another mental

> > disorder (e.g. dissatisfaction with body shape and size in

Anorexia

> > nervosa).

> >

> > In my readings of the various posts, it is obvious that an

awareness

> > of one's rosacea brings about a strong desire for attenuation if

not

> > cure. This is a natural response to illness. However, I find it

> > amazing how impacted some sufferers are psychologically and

> > socially. The post about not wishing to have children due to the

> > fact that the child might inherit rosacea really epitomized this

> > finding. That statement indicates that the writer truly believes

> > that life is not worth living if they must endure occasional

> > flushes/facial pain and minor cosmetic defect. When I was

diagnosed

> > with rosacea, I was quite relieved, and considered it a best case

> > scenario before my biopsy results were back. I believe that this

> > site is invaluable to those diagnosed with rosacea, however, I've

> > also noticed that many seem to be quite obsessed with their

condition

> > and may meet the above criteria for Body Dysmorphic Disorder.

When

> > one devotes all of their free time and money to treat this (in all

> > honestly, minor cosmetic) disease process, it is obvious that

their

> > psychosocial functioning is impaired. Treatments are available

which

> > may better quality of life.

> >

> > M Burock, MD

> >

> > P.s. I have experienced every symptom reported on this site

> > personally, including the neuralgia, flushing, telangiectasia,

> > pustule formation, and ocular rosacea. However, I will take a

> > diagnosis of rosacea over practically every other possible

> > diagnosis. No one has ever died from rosacea, ever..

> >

> > --------------------------------------------------------

> > Please read the list highlights thoroughly before posting to the

whole

> group. see http://rosacea.ii.net/toc.html

> >

> > When replying, please delete all text at the end of your email

that isn't

> necessary for your message.

> >

> > To leave the list send an email to rosacea-support-

unsubscribeegroups

> >

May 13, 2000

I agree whole heartedly with and the others. I am sorry I did not

read the original letter but we are a support group. I feel that we all have

a kindred spirtit because we all share rosacea. Some worse than others, but

there still is a common bond.

I myself do not have it as bad as some of the others but my heart goes out to

each and everyone one of them. I remember how bad I felt before I knew what

was wrong with me. It is a very depressing disease. I think not only with the

pain that we have but most of us are very vain about our faces. I know I am

and I am not what you would call a real beauty. If we are red or broke out we

really dont want others to see us. This is a disease that also takes away

your self esteem. I know my husband kept telling me I didnt look bad but when

I looked in the mirror it was horrible.

I do talk about my rosacea mainly to teach others about it and to let them

know it is hard to live with.

My hats go off to all of you for being there for each of us , good or bad,

thick or thin. We all need the support.

Bobbye

May 13, 2000

hi.

suffering is a humbling experience. you can always spot who has been there,

and who hasn't.

cenia

May 13, 2000

Wow.

I must say that was a very thought provoking comment re: body

dysmorphic disorder. I often find it helpful to devote some careful

consideration to things that most...invoke an emotional response...in

me. To be fair, I must agree that a " flag " goes up in my mind when a

rosacea sufferer mentions a more extreme way that the disease is

affecting his or her functioning (ie. decisions regarding children,

serious depression or social anxiety, etc.). At many times in our

lives, we could probably all benefit from some

counseling/psychological assistance to help us get " unstuck " from the

place in which we find ourselves.

In return for my consideration of your point of view, I would ask of

YOU that you review this and PREVIOUS postings you have left with an

open mind re: the following....

As the wife of an orthopaedic surgeon, I have been exposed to many

persons of your profession. It has been my observation that some

doctors, whether " green " or arrogantly self-confident, have been

trained to distance themselves from those they treat. Physicians may

unconsciously choose to do this by minimizing a patients distress or

by becoming excessively technical in communication with them, for

example.

As a clinical social worker, I have found that what human beings want

most is VALIDATION of their feelings (this is NOT the same as being

in agreement with them) and simple COMPASSION.

I say this as kindly as I can, Jeff, but some day some thing will

come along to knock you off your feet and shake your sense of control

over the world around you. Someday, you will understand....until

then, please try harder.

May 13, 2000

How do we know that this person is an MD? S/he may simply be a troll.

Matija

May 13, 2000

Dear Meg, et al,

I couldn't help saying bravo when I read your email responses about " not

dying from it " I suspect he has really not had as severe a case as many.

From my own personal experience, though I've probably had rosacea for

approx. 10 years, it has only been since the fall where I got a severe case

of it. I recall my mom telling me several years back an uncle of mine was

very sick from it. I remember saying " I have it; it's not THAT bad. " Now I

feel guilty. It wasn't until my legs would feel like collapsing from under

me after I would put some cream or cosmetic, etc., shampoo on that I had

always used before. And waking up every single night feeling like my body

was on fire and not being able to get back to sleep for hours. And not

having any doctor able to tell me what was wrong with me. And feeling

terrified that I had some awful disease. I had severe asthma as a child and

was hyperthyroid, but I don't think I ever felt so alone and frustrated with

anything before because the medical profession was unable to help or

understand. It was this support group that gave me strength and answers and

hope. I have my first photoderm appt. May 22 with Dr. Jay in Manhattan. I

am so encouraged by the positive things being said about it. I feel as if I

will get my life back. After all, I can't swim, garden, enjoy going

outside, exercise, etc. anymore. I suspect the Doctor has NOT had all the

symptoms many have had.

Patty

May 14, 2000

To everyone,

Sometimes words can have two meanings, and comparisons can be

confused. Think about this -I complained

that I did not have new shoes until I meet a man who had no feet. I felt sorry

for myself because a of all the pain

I felt until I saw a child dying of cancer. We should count our blessings and be

supportive of each other. Let's

stay positive and helpful, that is what this group is for!

Mark

ny Greenbaum wrote:

> Dear Meg, et al,

>

> I couldn't help saying bravo when I read your email responses about " not

> dying from it " I suspect he has really not had as severe a case as many.

> >From my own personal experience, though I've probably had rosacea for

> approx. 10 years, it has only been since the fall where I got a severe case

> of it. I recall my mom telling me several years back an uncle of mine was

> very sick from it. I remember saying " I have it; it's not THAT bad. " Now I

> feel guilty. It wasn't until my legs would feel like collapsing from under

> me after I would put some cream or cosmetic, etc., shampoo on that I had

> always used before. And waking up every single night feeling like my body

> was on fire and not being able to get back to sleep for hours. And not

> having any doctor able to tell me what was wrong with me. And feeling

> terrified that I had some awful disease. I had severe asthma as a child and

> was hyperthyroid, but I don't think I ever felt so alone and frustrated with

> anything before because the medical profession was unable to help or

> understand. It was this support group that gave me strength and answers and

> hope. I have my first photoderm appt. May 22 with Dr. Jay in Manhattan. I

> am so encouraged by the positive things being said about it. I feel as if I

> will get my life back. After all, I can't swim, garden, enjoy going

> outside, exercise, etc. anymore. I suspect the Doctor has NOT had all the

> symptoms many have had.

>

> Patty

>

> --------------------------------------------------------

> Please read the list highlights thoroughly before posting to the whole group.

see http://rosacea.ii.net/toc.html

>

> When replying, please delete all text at the end of your email that isn't

necessary for your message.

>

> To leave the list send an email to rosacea-support-unsubscribeegroups

May 14, 2000

I have to add my opinion to this ongoing discussion.

Count me among those who strongly feel that the suggestion of " Body

Dysmorphic Disorder " is condescending and unfair. The symptoms we deal with

on a daily basis can and do affect the quality of our lives. I am a talk

radio host who, before Photoderm, was in such throbbing pain under the

flourescent studio lights, I found it hard to concentrate on my job. I am

also called on frequently to speak in front of hundreds of people and at

those times my face would look like I'd had severe burns. People from the

audience would come up to me afterwards and ask me what was wrong with my

face. Does my physical appearance determine my self worth? Not one iota.

Does it affect my life? Unquestionably.

I can only speak for myself, but I am sure that others will agree, that we

gather here for the sole purpose of talking about our cea and finding

ways to comfort and help eachother. This is the purpose of this site!

This is not the whole of my existence. I have a very rich and full life, as

I am sure you all do. When I am not here, or in my doctor's office, for the

most part, I am not talking about ways to deal with cea.

Jeff, as having been both a patient and a counselor to young women, I can

tell you that the quickest way to alienate a patient is to invalidate their

feelings--whether you agree with them is irrelevant. I wish you well.

Beth

May 14, 2000

No, no one ever died of rosacea, but we do live in an appearance obsessed

society. I think especially for women, it can really difficult to face the

world out there when your face is bright red, peeling, etc. Everytime

someone tells me it looks like I forgot to put the sunblock on-- I hate it.

I've had rosacea and seb. dermatitis since I was in high school--let me tell

you it was a nightmare. And the whole time no one (including me) knew what

was wrong with my skin. When I was finally diagnosed it was a huge relief.

I just wanted to say that both the emotional and physical pain associated

with this condition should not be downplayed, because it really CAN be

emotionally scarring.

lenimarg@...

--------------------------------------