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#19318 - 06/05/03 04:41 AM worried about the future.....
Becky Offline
Member

Registered: 05/14/03
Posts: 15
Loc: Peachtree City,Ga, USA
Hi! This is Becky Hudson, I am 19 and I have llem. Ich. But anyways I know that I am young right now, and I should not even be worrying about it, but I just can't help it, and i was wondering if some of you could share some advice or stories... I am ALWAYs afraid that I am never going to get married, and that's my dream. I always think, no guy is going to want to marry me, I mean what guy is going to want to sleep with a girl everynight that has to have greesy lotion on every night, and someone that has to cream up twice a day, and just stupid stuff like that, but it does bother me!!! But I was thinking that if i heard some good stories, it might make me feel better you know??!!!! Thanks so much!!!

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#19319 - 06/05/03 08:41 AM Re: worried about the future.....
Luciana Offline
Member

Registered: 05/18/03
Posts: 63
Loc: Neuchâtel, Switzerland
Hi Becky!

I'd like to say I had the same worries at your age, I heard so many unpleasant comments (I'm still inhibited) but now I'm 46, married with 2 boys (20 and 24).
I'm sure you'll met a nice guy who'll see in your heart the gentleness, and the sensitiveness you have in it. He won't focus on your skin's aspect as we do when we suffer from ich. It seems to us everybody is always looking at our skin, doesn't it? But it's not true!
So keep a great self confidence, you'll see your turn will come too!
Take care and best wishes
Your ich friend Luciana.

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#19320 - 06/05/03 09:24 AM Re: worried about the future.....
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Dear Becky

First: Let me welcome you to this Bulletin Board! It is always a great pleasure to see that new people find this site and use it to exchange experiences and to support each other. At least for me personally it was an unique experience when I found this website and was able to communicate for the first time with other people with Ichthyosis.
However, I went through the same as you did and I guess most of us do. When I was younger I was extremely worried that I would never find a guy who would accept my skin condition. People always told me to not worry but of course I was worried anyway. And for a long time I did not have a boyfriend. A few years ago I met a wonderful, caring man and now we are married. He does not mind at all that I have some difficulties or special needs due to my condition and he is a great support! If you read posts on this Board you will find many others with Ichthyosis and longterm relationships or that are married. Some even have children. So all I can say: do not worry, I am sure you will find someone that does not mind flakes, lotions etc. but who will see the wonderful person that you are!

Best wishes,
Sofie

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#19321 - 06/05/03 03:14 PM Re: worried about the future.....
Danusia Offline
Member

Registered: 08/14/00
Posts: 63
Loc: canada
Becky, I am 44 years old, married for 20 years with two kids (no ichthyosis!) When I read the headline of your post I had to smile in that I have the same insecurites but with me they have to do with aging and what my skin will do and how I will be able to deal with it as I grow older and more infirm -- I guess I'm thinking about that more right now because my mom is 83 and has just been hospitalized (she has ichthyosis too)

Anyway, I mention all this because I'm realizing that at any stage in our lives we're always bound to have worries about our ability to cope with what our skin throws at us and how that gets accepted by the outside world. I think the most important thing is to have a lot of ways to connect with people that reflect who you are. Obviously you have a skin condition, but that's only a small part of what makes you you. Enjoy the friendships that you make because of what you enjoy doing and try new things, explore -- you are entering a time of great potential in you life. Will there be rejection? Of course. Will there be discomfort, lack of confidence? Sure! But show me a person, with or without ichthyosis or any other disability, who hasn't experienced those.

In my case, I have a husband who is a university teacher of medicine, who claims he doesn't even notice my skin! ( Talk about the absent-minded professor!) I have friends who'll say ( during a lunch break at a conference, for example): can I get you a coffee while you go to the washroom to put on your creams? But I still turn to putty if I think someone is staring at my skin ...

I hope this rambling helps a bit ....I guess the long and short of it is -- take the bull by the horns, but be prepared to fall off now and then!

[This message has been edited by Danusia (edited June 05, 2003).]

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#19322 - 06/05/03 05:01 PM Re: worried about the future.....
Becky Offline
Member

Registered: 05/14/03
Posts: 15
Loc: Peachtree City,Ga, USA
Hi!! Thanks so much for this stories, you have no idea how much they mean to me. I woke up this morning, and the first thing i did was get online to see if I had gotten any replies! Thanks so much! This is just such a great thing that we have, where we can talk to people. thanks again!!!

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#19323 - 06/05/03 08:56 PM Re: worried about the future.....
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Hi Becky,

I used to feel the same way you do. What the biggest obstacle to me dating and having a romantic relationship was my thoughts that no one could ever find me attractive. In August, my husband JR and I will be celebrating our sixth wedding anniversary, and seven and a half years together total.

I'm fortunate enough to have known one of my best friends since I was in sixth grade. She and some of my friends from college were over for dinner one night with me and my husband. He asked them about how I acted around guys before I met him and they told him that I was completely oblivious to guys when they would try to approach me about going out on a date, and had no clue that a guy was interested me. JR laughed and said it's still true. He swears that he sees guys hit on me all the time and I'm totally oblivious to it.

When I went to my 10 year high school reunion, I found out that a couple of the guys I went to school had crushes on me. It blew me away. When I mentioned it to my friends, their reaction was, "how could you NOT know? God, Chandra, you can be so blind."

Becky, I guarantee that there are people that find you attractive. Maybe you're not as oblivious as I am and was, but I would bet money (and I never ever gamble) that you are more concerned about your looks than a lot of guys are.

I met my hubby when I was 23 years old. JR is a very very outspoken guy. No one ever has any doubts about how he feels or what's on his mind as he makes sure EVERYBODY knows what's going on. He made it very obvious that he found me extremely attractive, and wanted to get to know me better. I doubted him for a very long time. Even after we were living together, I still wondered how he could possibly find me attractive. Now, after six years of marriage, he's finally "managed to pound it into your thick skull," as he says, that I'm beautiful.

As for how someone can stand to cuddle up to you when you're coated with goo, JR does it with me every day. He even helps me put ointment on when I need help, or just can't reach that one spot on my back. Wanna hear something really funny? I used to use baby oil in the bathwater and also would put it on after a shower. JR no longer associates that smell with babies like he used to, he now associates it with "sexy naked woman!!!!" as he puts it. He doesn't mind my skin peeling either.

So my dear, relax. There is somebody out there for you, you just have to open your eyes to see him.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#19324 - 06/06/03 04:32 AM Re: worried about the future.....
Becky Offline
Member

Registered: 05/14/03
Posts: 15
Loc: Peachtree City,Ga, USA
ahhhh these are all awesome stories, REALLY!!! Today has just been a great day, from reading these, gah... I really wish i could meet some of you!!! But again THANKS A BUNCH!!!!!!

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#19325 - 06/06/03 04:38 AM Re: worried about the future.....
Sirena Offline
Member

Registered: 05/04/03
Posts: 57
Loc: Wasilla, Alaska
You girls are so cool, You have inspired me to start dating again.!

Hi Becky, I have not been as lucky as these gals keeping a guy but my skin has never stopped me from finding one. What I have learned is that it is usually my feelings about myself that has caused the problem. When I am in good health, feeling good and energetic, when myself confidence is high, that is when the men suddenly appear. My skin never changed, just my attutitude about myself. The men I have had relationships with have never had a problem with my skin. They also said that soon after we meet they don't see it anymore.

Find your passions and pursue them, you will find a good fella. Don't sit around and wait for him. Go out and have fun till the right one comes along. I have gotten involved in relationships because I didn't believe anyone else would be interested in me. Don't underestimate your value. Wait for the right one.(Don't settle) I have two wonderful kids now. One from a previous relationship and the other I adopted on my own. No more worries. You have a bright future ahead!
_________________________
Michele Menzia

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#19326 - 06/09/03 11:41 AM Re: worried about the future.....
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Becky-I just got married in April and my husband doesn't care about my skin at all. Even on the days when I just feel I am a mess, he'll be looking at me, which now makes me feel even more insecure, until he blurts out how cute he thinks I am. I know he sees me for what I have to offer, but I truly believe he thinks I'm beautiful on the outside too. You will find this. I have no doubt. I think we view ourselves much harsher than others do. I'm offen pointing out when my skin is in a bad or good cycle. He just doesn't seem to notice it. When it's in a good cycle, I have fun with it. Right now it is and I'll just put my arm out to him and say 'silky smooth' and he just laughs. I've never had a problem dating and nobody has seemed to be affected by my skin. So don't worry and just have fun. The best guys to date are friends - someone who really knows you and you feel comfortable with. So develop real friendships and if one should bloom further, all the more for you, if not, you've got great friendships. You're at a fun age, enjoy!

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#19327 - 06/16/03 08:00 PM Re: worried about the future.....
Ep2952 Offline
Member

Registered: 06/16/03
Posts: 60
Loc: CANADA
Hi Becky you sound exactly like me when I was younger.I'm 44 now and I can tell you my skin has not affected my relationships with the opposite sex in any way.None of the guys I went out with even seemed to notice my skin.I am married and my children have totally normal skin.It's who you are that they'll be looking at.I doubt your skin will be an issue whatsoever.Take care.

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#19328 - 06/20/03 02:02 AM Re: worried about the future.....
Margaret Offline
Member

Registered: 10/14/02
Posts: 42
Loc: Virginia
Thanks Becky...
I'm 16 and I've had some of the same worries. I have another question. Wouldn't the dead skin start to annoy the guy after a while, espesially in bed?

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#19329 - 06/21/03 04:35 AM Re: worried about the future.....
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I am not a woman, and I don't have tips about dating ... but a few points, especially for young people. Becky, whatever happens in your social life in the future, you still need to make a living!!!!!!And the best chance, not guarantee, of making a good living would be going to college and studying a marketable major. I lost track of that fact, and it's been an uphill climb ever since.

Academically, I excelled in high school. It wasn't until college that the social problems of having ich hit me full force. To compensate, I drank and started to smoke grass when I never even knew what grass was in high school!!! Eventually, I quit grass, and graduated, but I wasted a lot of time, and did not get a MARKETABLE degree. I came out to Hawaii in my late 20s, and had to go back to school in my mid 30s to get a business degree. And I am still struggling with debt from years of spending more than I could afford from bad jobs. Moral of the story??? Can't let the social pressure of ich let you wallow in misery and self-pity, as I did, and lose sight of the fact that you still need money to live!

Margaret, one way to deal with the dead skins on the bed is the color of your bedsheets. For me with severe vulgaris I use white sheets, and try to change them often.

Good luck to you, Kiddos!!!
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#19330 - 06/22/03 01:35 PM Re: worried about the future.....
Anonymous
Unregistered


Margaret,
I wish I could answer that for you. When I first met my wife I was terrified of her seeing the dead skin in the bed or shower or anywhere I had been sitting. To this day I still ask her occasionally how she can stand it or if it bothers her. She just rolls her eyes and shakes her head and makes me feel like an idiot for even asking. I guess when you find someone who loves you for who you are none of that stuff will matter.
Keith.

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#19331 - 06/22/03 03:34 PM Re: worried about the future.....
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I asked my husband about how he can stand all the skin flakies around in the bed sheets, etc. He looked at me with his, "Honey I love you but you're being an idiot," expression and then said "Chandra, it's not like you can control it, and in the grand scheme of things, you are more than worth putting up with a few dead skin flakes in the bed. Get over it, because I have." Ooooh, how I love that man. What really used to embarass me was when I'd be cooking a meal and some flakies would fall in to whatever I was making (come on, admit it, I know it's happened to everyone with LI and other types of Ichthyosis) and he just laughed and said "No worries, it's just extra protein."

It is just another example of creating a problem another person might have without giving the other person the chance to come up with a reaction on their own. We worry too much!!!!
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#19332 - 06/23/03 02:58 PM Re: worried about the future.....
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Dear all

I would like to add something to what Promiseland mentioned. There was a time when I thought I would never meet a guy who would put up with the condition. At some point I realized that whether you have Ichthyosis (or any other special condition) or not, you will never know or have a guarantee that you will meet someone and get married. It took me a while to accept this and to sort of 'let go'. It is more important to find out what you like to do in life, what you are good at etc. than to think 'If I can't do this or that in life I will be unhappy for ever'. I hope you can understand what I am trying to say. I tried to decide to be happy, whether I get married or not.

Regarding the flakes in bed (and all the other places): My husband does not mind at all. As e.g. Chandra described: He thinks my worries are cute and not necessary. He says that it is great that I am every where at once and that I am around even if I am not at home...:-) Additionally: We only have light color sheets etc. as well. We change them often and in between simply shake them out.

All the best,
Sofie

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#19333 - 06/23/03 04:10 PM Re: worried about the future.....
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Becky,

Sorry I am so late in replying to your post...Your unique personality is what counts most....I am afraid we live in a world that forgets that very important characteristic, and we are all obsessed by enternal looks and youth....

I am married now, but the closest male friends I had as a teenager, loved being around me, for my cheeky sense of humor, and because of our common interests and special bonds...

Don't worry you only need to wait for that special connection, that has nothing to do with your skin condition....

I only worry about my husband's acceptance of me on such rare occasions, when I have had bad experiences at University, other than that, I don't feel like I even have a skin condition most of the time, where my husband is concerned....

I think that is the most rewarding/special aspect about finding your mate, it is at that time, that I believe many of us truly feel comfortable with ourselves, and allow our confidence to shine through...

As Laura very succinctly told us about 1 year ago....that people who have ichthyosis are able to weed out the frogs from the princes....because the really special ones will want to be with us, and any others, are not worth knowing anyway....

SO BE VERY PATIENT, AND JUST ENJOY YOUR YOUTH...YOU WILL BE RICHLY REWARDED....

And Sophie, I laughed at what you said about being glad to have the flakes around, because part of us are still there....That is so true, and funny....I still have a very close male friend, who when I visit him, we always hug goodbye, and I automatically, brush his shoulder down, and he tells me off, and says "he feels like I am still there, if I leave the skin on his shoulder"....

As for our sheets, I don't worry about the colours, just buy the ones I love...I just keep a shovel and broom by my bed, and sweep it out every morning...And make sure I brush out both sides of the bed....Mine more than his most of the time....You can all guess what the 'Most' means....or should I say 'least'....

Lots of Love
Pauline.

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#19334 - 08/06/03 03:04 PM Re: worried about the future.....
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
Hi Becky,
I just saw your post too and just wanted to say...I fell in love with my daughter Jordan's Dad and he has Ichthyosis(I don't )...though we are no longer together (which had nothing to do with his skin condition, we just didn't get along) I fell in love with the person he is, not what he looked like physically. Physical may attract some but it doesn't keep them and some people stay together forever while some people grow apart. Please don't ever feel like you will never find someone...just be patient and always be true to yourself.

[This message has been edited by Robin (edited August 06, 2003).]

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#19335 - 08/06/03 06:21 PM Re: worried about the future.....
Diane Albone Offline
Member

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
Hello Girl,

I am Diane, 24 years old and oh i really do know what you are talking about! I also thought i would never find a suiteble guy who would love for who i am and not for how i look. Well i did, i met tom and i can say i am married for one year and almost 1 month ;- He had it hard in the beginning, people asked him what he saw in me, his parents said nasty things... Well when i asked him the same things he said he loved my sence of humour, my smile,... just diane he said. i just want to say there will come a day and then you will meet mister perfect... I know now that if we will ever seperate it will not be for my skin but fore different reasons. (Now we are so happy!) Start dating girl and don't forget to enjoy yourself! big kiss

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#19336 - 08/20/03 10:07 PM Re: worried about the future.....
thicket Offline
Member

Registered: 05/22/02
Posts: 9
Loc: Washington
I felt the same too, I am now 32 and have been in 2 serious relationships. My current BF is great, he calls me dry girl and loves to lather me up with lotion [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]! So it comes down to you, confidence can win almost anyone over. Learn to have it and your golden!
Good Luck!

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#19337 - 09/16/03 01:48 PM Re: worried about the future.....
Mafalda Offline
Member

Registered: 09/16/03
Posts: 5
Loc: Lisbon, Portugal
Quote:
Originally posted by Becky:
Hi! This is Becky Hudson, I am 19 and I have llem. Ich. But anyways I know that I am young right now, and I should not even be worrying about it, but I just can't help it, and i was wondering if some of you could share some advice or stories... I am ALWAYs afraid that I am never going to get married, and that's my dream. I always think, no guy is going to want to marry me, I mean what guy is going to want to sleep with a girl everynight that has to have greesy lotion on every night, and someone that has to cream up twice a day, and just stupid stuff like that, but it does bother me!!! But I was thinking that if i heard some good stories, it might make me feel better you know??!!!! Thanks so much!!!



Hello Becky! I´m a new member. I´m portuguese and i suffer from icthiosis all my entire life. I´m 24 now, and i have all the same fears during muy adolescence, that you haver right now. My relationships all broke down... and i had the same toughts that you have.. "nobody loves me", "nobody will never love me"... but i was wrong! my mother has the same problem, she also suffers from icthiosis. She is the only one of five brothers and sisters (all very wealthy!) and she got married, and she had me. I came with the same stuff. Its not a very pleaseant thing to live up to... but whe have to be strong and have faith. I have someone very special right now. Hes very sweet, and understands my problem. Its not easy for someone to acept, but right now i just tough that i was blessed. I have a icthiosis lamellar, one of the very worst types of icthioses. I have it in all my body, in my hands, in my knees, foots, elbows...and so on, and so on...
and i have to do all those rituals of lotions.... that probably you also have. One day, if i get preagnant, i have to think take my son probably will suffer from the same desease, but thats something that i have to accept. You have to be strong. To try to accept you how you really are. That´s your only way to try to be happy.

And thats your first step to hapiness!
thing positive!
a very big kiss,
Mafalda

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#19338 - 04/13/06 04:44 PM Re: worried about the future.....
caitiejane Offline
Member

Registered: 02/01/06
Posts: 11
Loc: united kingdom
Hey All!

I know this posting stopped ages ago, but I just felt I had to say how reassuring the posts on it have been for me!

I too greatly worry about flakes in the bed and stuff like that, but your comments, particularly from Chandra (if you still read this board) have been great.

Fingers crossed for the future! Now if I could just get my head round to asking THAT guy out... lol

Caitxxx

[This message has been edited by caitiejane (edited April 13, 2006).]

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#19339 - 04/20/06 08:42 AM Re: worried about the future.....
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I am SO printing out this thread, and keeping it for Julia (Netherton's) for when she's a teenager and worried about all this stuff.

THANK YOU!!!
_________________________
Courtney
Mom to Julia

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#19340 - 04/21/06 03:58 AM Re: worried about the future.....
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
read this posting... made me cry.. thank u for the honesty.

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#19341 - 06/19/06 06:13 AM Re: worried about the future.....
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
The irony of this whole post is...talk to your girlfriends who DON'T have Ichthyosis and they will tell you that they always thought, growing up, no one would love or marry them because of their...complexion, weight, big butt, whatever!
All women (and men too) have their neurosis and it's normal. We just have something unique to focus on, but everyone has something that they think will repel the opposite sex.
I have left this thread here all this time because it stands the test of time. We will always have teen-age girls and young women coming to this site looking for reassurance that EVERYONE needs now and then.
I agree, print this thread and keep it for the baby girls you have now, because they will need it!

Glori

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#19342 - 07/14/06 04:24 PM Re: worried about the future.....
Shawna Offline
Member

Registered: 07/13/06
Posts: 7
Loc: Palermo, Maine, United States
Hey Becky, I'm 18 and although I'm young I have the same fears you do. I don't think age really matters with something like this though, ending up alone is big fear for anyone. We of course just get to throw our skin in as an added bonus, lol. I guess that we just have to believe that there really is someone for everyone. I mean, we are people... amazingly strong indiviguals, so why shouldn't we find our Prince Charming? We just have to keep our heads up and never lose faith. Good luck and if ya ever want to talk to someone who can relate feel free to e-mail me at; shanabooslg.

~*Shawna*~

P.S. Here is a quote that I absolutely love and it seems rather fitting.

"Never frown because you never know who is falling in love with your smile." Remember that... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#19343 - 07/15/06 06:53 AM Re: worried about the future.....
Luciana Offline
Member

Registered: 05/18/03
Posts: 63
Loc: Neuchâtel, Switzerland
Hi Shawna,

I like your words, and the quote is great!

All the best for everyone, and bye for now.

Luciana

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