A
female
age
30-35,
anonymous
writes:i suffer from Xeroderma Pigmentosum or XP. Its an incurable disease that deals with UV rays. I can never go in the sun, and if i do i literally burn. My disease at most has a limit of twenty years, which means in most cases a person who has XP lives until their twenty or under. I am 18 now. I've accepted the fact that i may not live long, but there's something i really want to experience before i pass. I want to fall in love, but i feel like if i do, i just might hurt someone in the end since i do have a limit on my life. I just wanted to ask anyone if its wrong for me to be with someone knowing i have a limited time here. Am i being selfish when the only wish i want is to experience love? Reply to this Question
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Fancy yourself as an agony aunt? Add your answer to this question! A
female
reader, Moo's Mum  +, writes (20 August 2011):
 You go girl. Knock those items off your list and enjoy them!
A
male
reader, Danielepew  +, writes (16 August 2011):
 As someone else said, this is not silly at all. Just keep going, courageously as always. We're all rooting for you.
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female
reader, maverick494 +, writes (13 August 2011):
That's not silly at all, OP. Reading it actually makes me feel bad about taking life for granted because some of the most risky things for you are things I can do no problem, yet I never stopped to realize that till now. I hope you can reach all the goals on your list. You're a lovely person and you deserve all the happiness you can get. Thanks again for keeping us updated!
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reader, anonymous, writes (13 August 2011): This is verified as being by the original poster of the questioni made a short list of what i want to do before i pass and i decided to share it, hope you guys don't laugh at my silliness ^^ ( the things written here are actually the riskiest but ARE THE ONES I REALLY WANT TO AT LEAST ACHIEVE)
1. Go to Florida (World Disney preferably)
2. Hike up a hill
3. Watch the actual Olympic games in person.
4. Attend a party with people my age (college party)
5. Go on a date during the day.
6. Go to a beach.
7. Visit the Walk of Fame in Hollywood.
8. Learn how to surf.
9. Attend an actual college class.
10. Jog around a park during the day without getting stared at.
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A
male
reader, anonymous, writes (12 August 2011): It seems like a fairy tale... its so sweet!!
I Wish you the best!! :)
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female
reader, Molly9945 +, writes (10 August 2011):
I'm soo happy for you OP, I'm glad that this guy is soo nice and wonderful to you. Keep getting to know him and enjoy yourself! Embrace all this joy and happiness!
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female
reader, Moo's Mum +, writes (9 August 2011):
Wow this is so lovely I'm so happy for you!
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A
reader, anonymous, writes (9 August 2011): This is verified as being by the original poster of the questionthe weekend i spent with him is probably one of the best memories i will treasure. Before, i used to only watch movies and read books about dating. I've always wondered exactly how the feelings felt. Spending time with him and getting to know him, for once i really did feel normal. Normal in a sense that for a weekend i actually felt like i belong, that i too can be this happy. I've never felt so alive and happy. My cousin, since she's practically my best friend really knew me well since the guy she introduced me to i consider perfect. I know no ones perfect, but to me he was. Granted he's practically the only boy i've met and actually known, but you know that feeling you get in ur chest? The one were it feels like you'll just burst into joy? The feeling of weightlessness? it was exciting. my cousin said that i really must like him since i looked like i was glowing. I dont really know what shes talking about but i guess its obvious to her, lol.
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male
reader, Danielepew +, writes (9 August 2011):
Keep going!
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female
reader, maverick494 +, writes (8 August 2011):
Thanks so much for the update OP! That's great! You deserve someone who treats you well and I'm thrilled that it's working out so well for you. I hope it keeps going the way you wish!
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reader, anonymous, writes (8 August 2011): This is verified as being by the original poster of the questionthis weekend was the best weekend i've ever had. I finally met him. My cousin was so right! HE IS THE KINDEST PERSON EVER!
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female
reader, maverick494 +, writes (3 August 2011):
Well girl, seems like a great guy! You won't have to cross the hurdle about your condition now that he knows about it, so now it's time to just sit back, relax and enjoy yourself! This guy is coming to meet YOU so be yourself.
When talking, don't be afraid of silences. You can use them to think and to give him time to think over what you said. Being a bit nervous is normal and often perceived as endearing--it means you feel something and that's a good thing. So that's pretty much all the advice I can give you. Try to enjoy yourself and have a good time! You deserve it!
Keep us posted on how things are going!
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male
reader, Danielepew +, writes (3 August 2011):
You rock!
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female
reader, chickpea2011 +, writes (3 August 2011):
 Hi dear friend,
I am so happy you decided to meet him...
First of all, don't feel pressure, just get to know him as a person, don't think of him as a serious commitment. Who knows what this could led to, but what matters now is to make new friends..
My advice to you:
* be yourself
* enjoy, have fun..
I hope you have a lovely time with your new friend, and hope you make many new friends. Be safe..eat something yummy..talk..talk...talk..
smile, have fun, enjoy your time with your new friend... You don't have to do anything, you are an amazing person, smart, have a heart of gold...deserve all the happiness in the world..
I am so happy for you...
Good luck! Be safe!
Keep us posted :-)
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reader, anonymous, writes (2 August 2011): This is verified as being by the original poster of the questionafter reading all the responses here and the support i decided to at least try and pursue my wish. I told my cousin that i wanted to try and get to know her guy friend. My cousin was quick to take action and by 10 am we were video chatting. it was really awkward at first. he was really nice just like what my cousin had described. But what i found really surprising was that he knew about me already. He and my cousin have apparently talked about me. I got really embarrass about it but my cousin said he had seen pictures of me in her facebook. she also said that the reason she wanted me to meet him was that he seemed to be interested in me too. I guess she kind of tricked me about it, haha. my cousin had also informed him a while ago of my condition.i had asked him if it turned him off, but he said there was nothing to be turned off about and that it didn't bother him. during our talk i found that he was active in church and was a devoted christian. He's a year older than me and has the cutest smile, granted i haven't really seen a lot of guys, but he was really cute. My cousin said of all her guy friend, this one was the nicest and she knew very well. he lives a couple of hours away from where i live but said he would be driving down this friday. My mom and dad happy obliged into having him over for the weekend. My cousin's ecstatic about our meeting, BUT I AM REALLY NERVOUS. any advice on a first date?
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male
reader, Danielepew +, writes (2 August 2011):
It is normal for you to feel this way.
We haven't seen you, poster, but none of us would reject you for your condition. That doesn't define you.
We never know how long we will live of what will happen tomorrow. Just live! Focus on enjoying whatever it is that you have. It's the only way to really enjoy life.
My heart is with you.
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male
reader, Flashtony  +, writes (2 August 2011):
my favourite French quotation: There is no better feeling in life than to love and be loved in return. go for it honey x
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female
reader, Molly9945 +, writes (2 August 2011):
I understand why you feel selfish, and I would too. But if my boyfriend had XP I would still love him and stand with him every step of the way. When he died I would mourn him, but I would be happy I made his life the best it could be by granting him the wish of love.
Like I said, if I had XP I would tell the person I was getting serious with. If they run away then they aren't worth your time anyway.
I sincerely do hope you find someone who is wonderful and loves you.
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female
reader, chickpea2011 +, writes (2 August 2011):
Hi,
Always do whatever your heart desires, and enjoy life the fullest and don't think about tomorrow... We never know tomorrow, only God knows...
If someone really loves you, nothing will stop them from loving you... Time doesn't matter..they will only be grateful that they had a chance, the opportunity, and lucky enough to have met someone like you...
You are not selfish, you are just too special..but, its time to think of you now... You deserve to experience, feel love, be happy, like everyone else in this world... Its not time that matters, but how much you accomplish, how much you can do with your time...
Don't worry about tomorrow, what matters is that you are here today... And what are you going to do today!! Live hard, laugh hard, love hard.....
A lot of people here gave you many wonderful advices, and they are all correct, we never know what's going to happen to any of us tomorrow...and you shouldn't feel any different...
God bless! Know that you have a beautiful heart... You really touched me with your kindness..
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A
female
reader, maverick494 +, writes (2 August 2011):
Ofcourse you deserve love, honey! We never know when we die. Though you have a rough estimate because of your illness, why should you be denied love? A healthy person with a boyfriend may die tomorrow in a traffic accident. That didn't stop them from getting together with someone they love.
"We all die, but how many have really lived?" is a favorite quote of mine. When the person you fall in love with knows what's going on and decides to stay, that decision is entirely on him and you should not feel guilty.
As for when to tell him, try to trust your gut. He might notice you cannot be in the sun and ask about it. Choose that moment to tell. Or when you feel you two are getting close and something could happen. Just makes sure he gets to know your personality first before you introduce him to the illness. That way he knows YOU.
Being ill has the side effect of people thinking of that person as "him/her with [insert illness]" instead of who they really are. People can be ignorant that way, especially if they haven't dealt with something like that in their ring of family/friends. So keep that in mind and don't get discouraged if some people react badly.
As for your guilt:
A while back there a was a question on this site from a guy who had fallen in love with a girl who had terminal cancer. She kept pushing him away because she didn't want to hurt him, but he wanted to be with her till the end and asked us how he could get through to her that he was there to stay.
When you meet someone you really like and they feel the same, don't deny them the chance of being happy with you for as long as it lasts.
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A
reader, anonymous, writes (2 August 2011): http://www.bbc.co.uk/news/magazine-14184720
You see? It's never too late! I sincerely hope you find what you're looking for, sweetheart. You thoroughly deserve it. Good luck and God Bless x
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reader, anonymous, writes (2 August 2011): This is verified as being by the original poster of the questionim really touched at everyone's support. Thank you guys so much!! Every since i was young ive always dreamed of getting married to a guy i love and have a family, but since my parents and doctor informed me of my limitations it just really broke my heart that i wont be able to experience growing up old and seeing my grandchildren. It took me a while to accept it but i know god has other plans for me. My only wish is to experience falling in love and being with that someone meant for me. One of my cousin wants to introduce me to her guy friend. She says he's a good person and is really kind. She's actually planning on having her friend drive to where i live so we can meet. I want to try and meet him but i'm scared that if i do like him ill just end up breaking his heart. I don't want to leave knowing i caused someone pain. And also if i tell him of my condition i'm scared that he'll back off. I'm also scared that if i do really fall in love i wont be able to say goodbye. I know some of my wishes may seem childish and unrealistic but i just really want to go on dates and do all the lovey-dovey things that a couple does. But every time i dream and think about these i feel as if im the most selfish person in the world since i'm holding on someone that i feel i shouldn't even be close to. I guess its normal for me to feel this way?
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female
reader, anonymous, writes (2 August 2011): I think its wonderful that you are so concerned about hurting someone, it shows how great of a person you are. Everyone deserves to love and be loved! Its a wonderful feeling and you definetely deserve that. I think it is important that you make whoever you do fall in love with aware of your disease just to be fair.
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female
reader, Moo's Mum +, writes (2 August 2011):
Yes you deserve love. I hope you find it!!!
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female
reader, birdynumnums  +, writes (2 August 2011):
 Lovely words from a lovely person, and truer words were never spoken. What Daniel said...
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female
reader, Molly9945 +, writes (2 August 2011):
It's not selfish at all, but you need to let the person you get serious with that you have a short life, but you want to fall in love.
I am very sorry for your condition and sad for you. I hope you find someone who will care for you, understand your condition, and treat you right all the way to the end.
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male
reader, Danielepew +, writes (2 August 2011):
Your feelings are pretty much understandable. I trust you will meet someone who will appreciate you for who you are. You are not your disease, dear. You're a lovely person. Know that for sure.
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