Posted by: Nikkster

Relationships - 02/18/01 01:35 AM

I'm putting this one out to everyone. I wanna know what's on the minds of women and men. So who has it harder? Men or Women with Ich? Being a beautiful single woman, (who happens to have a skin condition [img][/img] ), I find it kinda hard to meet guys. I think women overall have it tougher because of the media images and socialization that we haveta look a certain way and be a certain size. All around, you see these airbrushed, impossibley built, plastic women who serve as image role models to little girls all over. Growing up with that nonsense can be kinda hard. It's takin' me a long time for me to be comfortable with who I am and what I look. The older I get, I've learned that beauty is definately in the eye of the beholder.

That being said, it's still hard to put yourself out there to meet guys. Where the heck are the men hiding. My point is I think it's a tad harder for women with ichthyosis to meet guys. Of course..... that's only my opinion [img][/img]

What do you think?

Posted by: Anonymous

Re: Relationships - 02/19/01 02:54 PM

We had this dicussion in the men's group a month or so back. Some of the men were sniveling that we had it harder until Les and I pointed out the same things you have, although they still haven't admitted it. I would still like to point out that we all have it hard in some ways, whether or not or ichthyosis is very noticable or not. I think those of us who can't "hide" our Ichthyosis sometimes have it harder in relationships because of the what people see at first. Then again, those of us who hide it have to keep up the charade and in the end when you find someone you have even more explaining to do as to why you have been hiding this from someone you may love. I definently think women have it harder because of the "super model" syndrome we talked about, but it is no easy job for a man with Ichthyosis to muster up the courage to ask a women out or even talk to a stranger when he knows they can see his skin condition. The first thing many people do is stare right at it, not your eyes or anything else. I know how women feel when they say that men always stare at their breasts and not there eyes, well, ok, that's not the same but you know what I am getting at. Bottom line is as we said before, if someone is even hesitant to except your ichthyosis then move on. You can't be in a relationship with someone you are not on equal ground with. What's inside of us, or anyone for that matter, is all that matters in the long run. If your skin bothers someone then move on and consider it their loss, we have our lives to live and can't be kept down by anyone who is that ignorant or shallow. I wrote a letter similar to this one in the men's section answering the same topic brought up by a man this time. I would like you to read it since I haven't had time to put any thought or time into this one due to the fact that I must leave for work. Thank you.
Posted by: Laura Phillips

Re: Relationships - 02/20/01 05:00 PM

I'm with you Nikk--I think it's much harder on women. Goes back to the way we, as a culture, are socialized to view beauty. "Beautiful" skin (the traditional definition, soft and supple, perfect in texture and coloration) is something that we've been taught to include in the definition of a beautiful woman. And women are expected to "show more skin" all the time--not just in formal dresses and other 'dress up' occasions, but everyday--women's fashion much more frequently than men's calls for short sleeves, sleeveless, bare midriff, short skirts (heck, any skirt at all is going to show more leg than pants). It's much easier for a man to camoflage his skin and stay "fashionable" than for a woman.

And how many "romantic" scenes feature the man stroking a woman's bare arm, or bare back?

Make up. Guys don't have to wear make up at all! Make up can become an asset in terms of camoflaging ichthyosis, but overall, makeup is MUCH harder to work with (and have a good result) when you have ichthyosis. There are styles of makeup that are "fashionable" now (especially around the eyes) that I just CAN'T DO because of my ichthyosis.

Women typically wear more jewelry. Hard to really "flaunt" great rings or bracelets, when you're trying to cover up your ichthyosis covered hands. Nevermind what your creams do to your jewelry (some soft gemstones and pearls I can't wear at all, as the AHAs will just destroy diamonds I have to clean EVERY DAY because the cream residue that manages to get on them makes them hazy).

I put runs in my nylons because my scales snag them as I get drier and drier throughout the day (for this reason I wear tights alot in the winter...but there's only so much of the season you can wear tights!). Nevermind those hot, hot summer days when I REFUSE to take my nylons off because I'm trying to camoflage the scales on my legs.

Arrgghhh! I'll stop my rant now, though I could easily keep going [img][/img]

And I'll apologize to the guys now--I'm not saying you have it easy, by any stretch. But you definitely have it easier in my mind than us girls.

Posted by: Laura Phillips

Re: Relationships - 02/20/01 05:09 PM


I hear what you're saying (and really liked your earlier post, I read it at the time you posted it). That's a great philosophy, and it's reassuring. However, I'm not sure it's entirely realistic or fair to say, "I look how I look (no matter how good or bad you might look that day) and it's the other person's loss if they don't accept me."

I've had a number of good friends and boyfriends who weren't entirely 'sure' of my skin condition when we first met...and it wasn't until we'd developed a little bit of a relationship with each other that we talked about it, and it really was no big deal. They were totally accepting. could have stopped us from initially meeting or talking, and then developing a friendship. Again, the way we are socialized, first impressions have a big impact on whom we choose to pursue for relationships. I don't think it's fair to say that if someone balks at your appearance the very first time they see you, on their very first impression, that you should just write them off as some kind of shallow person with issues, and that you're better off without them. Some very good people may initially balk, but then get over it, and go on to have very healthy, mutually fulfilling relationships with each other.

And I think this is maybe more what Nikk is getting at, especially in a dating context. It's getting past that first impression that's a real issue in dating (not just with ichthyosis, but with anything that doesn't fit your criteria of the perfect mate!) And I think women are more forgiving of men's physical appearance in terms of a first impression than men are of women.

Just my personal, however flawed, opinion [img][/img]


[This message has been edited by Laura Phillips (edited February 20, 2001).]
Posted by: Anonymous

Re: Relationships - 02/22/01 02:02 PM

I don't think I ever said that if someone doesn't except your ichthyosis at first glance to forget them. I said if they have a problem with your ichthyosis then it is time to move on. Obviously they would have to already know you in a more intimate manner to have seen it ir talked about it. You did bring up a few points I never thought of though. Women can show more of their body and still hide it so to speak, then men. Men can't/don't wear tights, nylons or make-up. It's either pants or shorts for our bottom half, there is no hiding our legs other then socks, and they only go so high. As for women being more forgiving of a mans personal appearance at first glance, well that all depends on the individual no matter what sex they are. Don't get me wrong, I still think women have it harder.
Posted by: Nikkster

Re: Relationships - 02/23/01 01:24 AM


Both Keith and Laura brought up good points. BUT, I agree with Laura about women's fashions showing more skin and thus making it harder for women to hide/camaflouge their conditions. Skimpy t-shirts[and I do own a few [img][/img] ] Sleeveless shirts, halter tops, short-shorts, low cut blouses, etc..... Heck yeah it's hard to cover your skin up as a woman. At a formal event or outing most styles have women in sleeveless,low cut attire, while men can wear a tux. Everything is covered but the hands. That is only one example.

I don't like the term "forgiving" in terms of how women may relate to men in terms of appearance. I would say that we are more understanding or accepting. Yup, I'm still believing that women have it harder. I'm not saying that men with ichthyosis don't have their issues, 'cuz I'm sure that they do. But I don't feel that they have the same social pressures that women confront everyday. That goes for women with and without skin problems.

On your local news stations how many older, heavier anchorman do you see compared to women? Very few I bet ya. The men can be gray, heavy and in their 5o's or 60's while the women are probably thin, no gray, 30's or early 40's at the oldest. And please don't give me Barbara Walters and Kokie Roberts as examples, because I think that they are exceptions to the rule.

Yeah, I know I just went on a tangent. But again, I think we women have more to deal with. That is just our lot in life [img][/img] And again, only my personal opinion.

Posted by: Laura Phillips

Re: Relationships - 02/23/01 05:38 PM

This is fun, hearing people's more philosophical thoughts on life and ichthyosis (and Keith, I'm not surprised to hear that you and I probably think a lot more alike on this issue than might have first appeared).

At the risk of making another generalization [img][/img] it's been my general experience that people with ichthyosis are highly intelligent, insightful people--maybe more so than the general population (this strikes a nerve with me right now, as I was recently corresponding with an attorney who was trying to prepare a case for someone with ichthyosis who'd suffered brain damage while in the hospital due to the hospital's negligence, and the defense was indicating that they had evidence that ichthyosis was associated with retardation and other reduced mental capacity, which we all know is total hogwash). Anyway, I really enjoy hearing people with ichthyosis 'workin the brain' over issues like this.

Thanks for bringing it up Nikk!
Posted by: dslacker

Re: Relationships - 03/01/01 03:53 AM

Since Im the one who started the topic in the "mens" discussion, I really have to join in here [img][/img] Maybee that will also clarify some things...
As I stated there I'm a 33 years old male who has EHK, and I really dont have much problems with finding female friends, but I have started to get a little annoyed by the fact that wast the majority of them only wants socalled platonic friendship...
After seing some of the replies and thinking some more about it, I came to think that it maybe could have something to do with basic biology:
Females look for mates who would be "the perfect parent" (good offspring, safety, security, etc) and males want to "spread their genes".
And YES, I know this is a gross simplification, but it does explain something since, in my oppinion, most Ich. people really dont fit much in the female wishlist...
Where as males might not be quite as "picky"...

hope This doesnt offend to much, and that this could further the discussion [img][/img]

| The Danish Slacker |
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| |
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| "Have you got the | | will to be weird" |
Posted by: Blue

Re: Relationships - 03/01/01 04:49 AM

Hi All,

First of all, I have x-linked, and have a Master's Degree and am currently working on my second one. So, I don't think that mental retardation goes along with ichthyosis.

Secondly, as a male with multiple birth defects, feel as though my defects have not played a part in my social relationships. However, this may be denial on my part.

I enjoy the discusion!
Posted by: Laura Phillips

Re: Relationships - 03/02/01 04:24 PM

Now I'm going to start to get off topic (but still waxing philosophical).

You made me think Blue---I think my skin has played a role in *some* of my social relationships. BUT, especially as I get older, I think this has been a GOOD experience for me. How your ichthyosis (or other birth defects) affect your life is a very complicated discussion. But at the end of it, I feel like I've been blessed to lead a pretty charmed life, I like who I am, what I've done and what I'm going to do. And ichthyosis is inextricably intertwined with that. I'm not sure that given the opportunity I would choose to live my life without ichthyosis. It undoubtedly would have ended up being a different life...and I kinda like how this one is playing out.
Posted by: Nikkster

Re: Relationships - 03/22/01 04:08 AM

Hi All,

Laura, I agree with you about the positive impact ichthyosis has had on my life and relationships. I know that I would not have been the person that I am without it and that I would not have met all of the wonderful caring people that I have. It definately made me a shy child, but fortunately I have grown out of this. However, I'm still kinda withdrawn when it comes to talking to guys. So I would say that my male/female relationships have been impacted in a negative way. I'm getting better at it though [img][/img]

Hey Blue: Good to see that ichthyosis has not majorly effected your social relationships.

Posted by: Chandra

Re: Relationships - 03/26/01 07:55 PM

Mental retardation? Did I mention I speak not only English, but German, French and Spanish [img][/img]
Posted by: buddybooth

Re: Relationships - 05/15/01 07:47 PM

Ok, my turn. I'm a 20-year old male, thin and athletic. I have friends that I have known for years that still do not know that I have ich. People I work with don't even know I have it. But obviously, when it comes to physical relations, there's no hiding. My girlfriend and I have been together for about 4 months now and she is well aware of my skin condition. However, it's not something I put out in the open in the beginning. I felt more comfortable learning her first and telling her when I felt comfortable telling her. She took it very well, just as I was hoping. Alot of people would see this and think 'EEW'. But, I think when you look at the right people, it doesn't bother them. I have had lots of past relationships and never been made fun of or turned off because of ich. I did however, have a couple females over one friday night that we were going to out with for the evening and out of nowhere, they started talking about a girl they knew that had ich. They didn't know much about it except that it was 'gross' and 'she leaves flakes on the couch when she gets up'. It didn't bother me much cuz I knew they didn't know any better. However, they were very stunned when I brought them in my room and showed them this website and showed them that I too, had ichthyosis. I got alot of apologies that night, but it was the fact that they were unaware of the exact situation. I may be lucky in a sense to have not had people pick on me or make comments, but I guess like most have said, it all depends on the kind of person that the other is. I see that some are married. How do the husbands feel? What do the wives think?
Posted by: beccafly

Re: Relationships - 07/10/01 10:28 PM

Hi again,
Boy o boy..You guys are such wonderful people!! I am so glad I found this web site.
Where do I start on this subject..
Let me say that I am married and have no children and work in the public everyday for Delta Airlines.
Everyday I think about my EH..Everyday I work on skin and I live it..I mean it is not a thing that will pass..The same as you all do. I don't think that anyone understands or even has a clue what we go through.
Someone who has acne, knows that it will go away, but ours is here to stay.
I am very lucky I guess that I was raised in a very small town where everyone knew everything about me and and my family. I never really had a problem with relationships but I made it a problem. What I mean is, I made more of a problem about it than it really is. My Mother put me in counceling about it and I have been through it all. Everytime I would have a break up or not be invited to a prom or some social thing, I always thought that it was because of my skin. I had a lot of stuff to carry around about it. When I got married, I thought that he didn't love me because of it and on and on and on.
I finally learned after working with the public for so long that people really don't care. I mean yeah, everybody wants to look great and have some attention from people, but all in all once someone knows you and learns about all of your scars and fears they get over is more than skin deep and I'm not trying to sugar coat things, because I know that we have it harder than most people with relationships, but keep the faith and learn to know that it is us that have more of a problem with it than people who don't have it. I noticed the other day, when I was filling in on the ramp, with the guys helping to load the plane, that I would pull away immediatly when touched by one of them or flinched when someone brushed across my skin. It is me that has the problem, not them..think about it...
Posted by: Elise

Re: Relationships - 09/17/01 06:21 PM

Great topic... First let me say that I am a 42 year old woman with severe Lamellar Ichtyosis. I was married for 15 years(most of it happily), divorced (had nothing to do with my skin)and remarried for 2 1/2 years. I am a psychologist and work with people with many problems, some physical as well as emotional etc. I speak here not as a psychologist but as a person with ichthyosis who has had a chance to get the inside feelings of many people with physical differences. I think that a lot of the "relationship" problems we have we create by our own unacceptance of ourselves. OUR discomfort is infectious. People in general are accepting of people who accept themselves, are sure of themselves and act as though it is "no big deal". If you look around at a large gathering of people with ichthyosis you can see the range of self comfort... are the people in relationship more comfortable because they are in a relationship or are they in a relationship because they are comfortable with themselves. I believe the latter. When I was small my mother told my older sister, "if you want to attract a good man, be the kind of woman he would be attracted to".. meaning mentally, emotionaly, and spiritually. Relationships come best to those who have a lot to give not those who seek them to fulfill themselves. Geez I sound like a preacher.. sorry about that. I have found for myself I have met very few men who had a problem with my skin. Because my skin is very visibly different and not easily hidden my appearance probably served to weed out the ones who were not up to it. Also... I agree women have a harder time-(see Lauras commnets - I HATE NYLONS), except in working with many people with ich over the years I have found that many men are more resistant to using or trying lotions creams etc. Is it because "lotions" etc are marketed to females? It is refreshing to find men willing to talk about it.. Thanks guys you're great!
Posted by: Elise

Re: Relationships - 09/17/01 06:28 PM

Laura, I work several days a week doing neuropsych work often with brain injured people... as we both know there are forms of ichthyosis that also concur with mental retardation. As you also know I have found that outside of these rare forms many people with ichthyosis not only have a wide range of normal intelligence but it appears to me that there is an extrordinary number of very high IQ people with ichthyosis... it seems to go statistically beyond the normal range of scores and I have often wondered if there is not a tendency toward high IQ associated with at least some forms of Ichthyosis. Anyways, I would love to hear more about this case!!!
Posted by: cloudlet

Re: Relationships - 08/24/11 09:32 AM

i mean there not so big difference.. because ichthyosis is ichthyosis,there is problem of ichthyosis severe.. the more severe that is the diffcicult people is accept to it... sometimes with me some people are very shamed while discute or i am girl or boy,because i haven't long hairs,or big tall,or whatever big boobs.but that is my diseas.the girl maybe is difficulter,but i think : all is in the mind.. also i philospher that people with the invisible diseas is more easy to get friends,why?because their diseas isn't visible,they don't need all explain : what the hell that is?they have more easy than us.. example if someone have cancer or other serious inside diseas as mental no one didn't saw them why?if you are pretty so that's not important..

Posted by: jamiehout

Re: Relationships - 10/31/11 05:43 AM

spam removed
Posted by: Anonymous

Re: Relationships - 01/16/12 05:24 PM

hi everyone,
ive had ichthyosis vulgaris since birth, i'm 20 years old. did any of you get picked on or made fun of because of your icht. when you were little? i did and it got to where i was in high school that i still felt like an outsider, i kept quiet in class pretending i was invisable. i had few friends who didn't care if i had it. the hardest part for me is when i look in the mirror and see it. i start breaking down, crying. then at other times i just put lotion on and it looks like i have a sun burn that'll never leave. ive had only one relationship. the guy i went out with for four years during high school. he was controling. wanting me all to himself. i had to delete all my guy friends numbers off my cell because he thought i would cheat on him. i broke up with him the day after my 19th birthday. he called me such horrible names when he texted me. i deleted his number off my cell and unfriended him from my facebook. after that i felt like i had my life back. while i was with him he wouldnt let me talk to my best girl friend, or let me spend time with my family. i felt like i had no life. im glad i broke up with him.
Posted by: lisa-p

Re: Relationships - 03/26/12 08:36 PM

I had a really hard time with looking different when I was a teenager. I was bullied constantly, and had trouble partaking in normal activities due to overheating issues, as well as not wanting to wear shorts, or long sleeves and in general doing whatever I could to keep my different looking skin covered.
These insecurities I built up as a teenager do somewhat carry over into my adult life, but largely I have found them to be "all in my head"
I have not had any person that I have dated react with shock and horror to my skin (and believe me, it's not a mild case)
My strategy though, is to keep it covered until the 2nd or third date.
I spend a lot of time on my face, but the rest of me is scaly. So long as I wear pants and long sleeves, you wouldn't really know unless you got a good look at my hands.
I usually bring it up to sort of "warn" people before I actually get bold and "show" them by wearing something with short sleeves.
While I've been on a whole lot of dates that didn't turn into relationships, I doubt my skin played any significant role.
Posted by: eve92

Re: Relationships - 12/08/12 01:24 AM

This is a really interesting topic especially because I always thought that guys have it harder in the relationship department. As a woman you may have to adapt to certain standards of beauty, but at least as a girl I do not need to work up the courage to actively hit on a guy. It's just socially expected of men to do it while girls are on the receiving end of the deal.
But I guess I would hve a hard time doing that with or without ichthyose, after all rejection hurts regardless of the reason you are being rejected for wink.

Before college (I'm currently 20 years old and have CIE, just some basic information), I went to an all girls school and I think that helped me alot in the 'bullying' department. Girls can be mean, but without boys we also tend to form closer bonds. I really feel that it took some of the pressure of my teenager years that I didn't need to deal with boys and realtionships on top of the issues of growing up and having ichthyose. but I guess it also sheltered me in the sense that I really do not have an exact idea what men go thorugh in puberty (I only see the result.......or you know, what counts as result :P)
Posted by: Sagittarian2012

Re: Relationships - 12/19/12 08:11 PM

Just wanted to say as a male in my early 40's with Lamellar Ichthyosis that dealing with women has gotten easier over the years. I would think that women would have it tougher because men, even though we do have to deal with how we look, probably can use confidence to trump a lot of things. And even faking it can get you pretty far. While I think confidence comes with age I have read books over the years dealing with body language and eye contact and those have helped alot. I have also read books from the pick artist community like Neil Strauss' The Game and those have helped too. I don't condone everything in that book and I'm not out picking up women in bars every weekend but it did make me realize that while I wasn't doing anything to repel women I also wasn't doing much to try to attract them either. Even Leil Lowndes book Undercover Sex Signals, which doesn't contain anything really suprising, really drove home the point to me that women are constantly sizing men up as soon as they walk through the door to see how they well they handle themselves. An attractive woman can fall flat on her face and that won't bother men one bit but men don't have that luxury in those first few minutes. So for me women have become fun again and that was something that got lost along the way.
Posted by: Jazz

Re: Relationships - 02/05/13 10:53 AM

Hello Everyone,
My name is Kehkasha and i am 23.
I just got recently engaged to a guy who is so good, and i really love him a lot. I stay in India and he stays in US so there its a long distance relationship till the time we get married. when i was young (4yrs old) i came to know that my skin was not like other kids and at first i was so innocent that did not notice but gradually as i grew up i became ashamed of it as i could not wear skirts or shorts while i was skating. I felt really bad when i used to skate and people used to look at my legs. When i came in collage i learnt the art to hide my used to wear skinny jeans and traditional indian dresses which covers the body. but the wish to wear skirts was always there. Now as i got engaged i am hiding this one single secret from my finance and i dont want him to knw because he will leave me..i usually gave him hints that what if i turn out to be a horrible monster, would you leave me..n he always said no,,but i know that once he comes to know this secret he wont love me the way he is doing now..
Just because of this i am so scared and depressed and i really dont want to lose him because he is the best thing ever happned in my entire life,, i cnt see him see me like that..
Please help me.I want this suffering to end and i cannot live like this any more.. we are getting married in November 2013 and i dont know what to do.
Please please help me because god cant.