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#290 - 03/22/01 04:08 AM Re: Relationships
Nikkster Offline

Registered: 08/14/00
Posts: 83
Loc: Philadelphia
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 However, I'm still kinda withdrawn when it comes to talking to guys.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.


#291 - 03/26/01 07:55 PM Re: Relationships
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Mental retardation? Did I mention I speak not only English, but German, French and Spanish [img][/img]
I am female, and was born in 1972 with Lamellar Ichthyosis.

#292 - 05/15/01 07:47 PM Re: Relationships
buddybooth Offline
Junior Member

Registered: 05/03/01
Posts: 4
Loc: Beloit, WI USA
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?

#293 - 07/10/01 10:28 PM Re: Relationships
beccafly Offline

Registered: 08/21/00
Posts: 7
Loc: Princeton,IN,USA
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...

#294 - 09/17/01 06:21 PM Re: Relationships
Elise Offline

Registered: 09/17/01
Posts: 28
Loc: Lynnwood, Washington
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!

#295 - 09/17/01 06:28 PM Re: Relationships
Elise Offline

Registered: 09/17/01
Posts: 28
Loc: Lynnwood, Washington
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!!!

#27913 - 08/24/11 09:32 AM Re: Relationships [Re: Laura Phillips]
cloudlet Offline

Registered: 03/18/10
Posts: 9
Loc: Latvia
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..

#27997 - 10/31/11 05:43 AM Re: Relationships [Re: Blue]
jamiehout Offline
New member

Registered: 12/31/10
Posts: 3
spam removed

Edited by Hearsay (10/31/11 01:26 PM)
Edit Reason: spamming

#28202 - 01/16/12 05:24 PM Re: Relationships [Re: Nikkster]

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.

#28293 - 03/26/12 08:36 PM Re: Relationships [Re: Nikkster]
lisa-p Offline

Registered: 03/26/12
Posts: 16
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.

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