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OP, how are your mother and grandmom today? Seems their health are OK, isn't it? Have you gotten a second or third opinion about your diagnosis?
The society tends to blindly give doctors, and any experts, too many credits than they deserve. Only to have their opinions or "best practices" proven wrong later. Sometones centuries later.
Have you read the book Dance with Chance? About the medical part.
Last edited by Waterlily Pad; 07-21-2012 at 05:52 AM..
Well it's official, I'm almost in my mid-20s, have a successful career, and have never, EVER gone on a date or had a serious boyfriend.
I always told myself in my later high school years and throughout college that I want to stay focused on my school work and finding jobs rather than looking for a boyfriend. I have had plenty of crushes and been interested in plenty of men, but I have always told myself that I don't want to burden someone with my problems. In college I convinced myself that "I don't have time for a boyfriend" but now that many of my current grown-up goals in life are stable, I am the only one holding myself back.
When I was around 16-17 years old I found out that I inherited a neurodegenerative disease that would dramatically shorten my lifespan and most probably be passed on to my children, if I ever have them. Since I found out I have this disease, I have been too terrified to date!
What I fear most is that as soon as I get too close to a guy, I'll have to tell them about my disease and therefore be pressuring them to decide whether or not they want to stick with someone that may pass away as early as their late 40s or 50s and may feel pressured or obligated to take care of me when I no longer have control of my body movements. Not the mention that if we ever decided to have children, the long process of assisted fertility to ensure that my children never, ever have this disease.
Even now when I see someone I like or connect with, I think to myself, they don't need all this drama in their lives! They'll find someone healthy to be happy with. I think in some way I am protecting myself from a guy who finds out I have health problems and breaks up with me as soon as I tell him.
Sorry for the long post. I've been wanting to get some suggestions or ideas as to how I could go about dating without constantly worrying about telling the other person about my condition. When is the right time? Are men (or women if you're reading this) willing to look past my disease and enjoy the relationship we have now?
Don't be sorry for the long post. Sometimes we don't have anywhere else to go to look for ideas and for me so far this has been a great forum. Now, to start with, why don't you do some research on what you have going on medically and find a doctor who may be able to help you out? Medicine changes daily that is for sure and there is always hope so don't sell yourself short on that one. You don't have to go into full blown medical details with anyone you date unless the dating becomes long term or serious, then I would talk it over with them. Not a big deal about fertility either. There are plenty of children out there who would love to have an adopted family to love, so there is that optionas well. I believe you have to stop thinking so far ahead when you meet someone and just enjoy the moment. You are not going to marry the first person you meet so go out and have some fun and wait until the right one does come along. My second husband came to me having had 5 heart attacks at a young age. I fell madly in love with him and knew he had a bad heart. He constantly had nitroglycerin in his pocket and at times would have to be taken to the emergency room. God, how I love this man. He told me point blank that I had to be aware he did have a bad heart before he asked me to marry him. Again, I overlooked his issue. We married in September of 1991. In June 1992, he had a massive heart attack and almost died. When I went to see him in the hospital, he told me,...."I fully expect you to get on with your life should this not go as we want it to". Of course I didn't want to hear that. Before he died, he did tell me "thank you for loving me"..it was heart wrenching. He died in his sleep at home, peacefully, lovingly and I was blessed to have had him for such a short time..he was 42 years old. See, life can bring you joy no matter for how long and no matter for what reason. God put me into his life to bring him joy just like God will put someone into yours. Don't hold yourself back any longer..time waits for no one that is for sure and I do believe you are wasting some valuable time! Good luck and get out there and make someone happy!!
Sorry about your condition and I wish you the best.
I'm a very honest person so I would bring this up right away. No sense on hiding it.
I do not understand why anyone would take a chance on passing along a disease so if there is a risk I would suggest no children. Maybe consider an older guy who does not want them or does not desire to have any more.
I never wanted children and there are guys out there with the same view.
Since this is something you want I wouldn't give up on dating. Reality is the chances are great that a permanent relationship is not going to work out anyway.
Strange choice for a user name since you mentioned you are available.
You're only in your mid 20s, so don't worry too much about the future in a relationship. Just date and be a little relaxed , don't worry about the future at all. When that talk and the serious stuff comes up then you can talk and go from there, until then.. it's just your own business.
Everything will be fine
I concur here. It's not like when you go out with someone they will marry you the next day. Just have fun. Go out on dates. Worry about divulging your health issues later when you had the 'talk'. Live your life.
Well it's official, I'm almost in my mid-20s, have a successful career, and have never, EVER gone on a date or had a serious boyfriend.
I always told myself in my later high school years and throughout college that I want to stay focused on my school work and finding jobs rather than looking for a boyfriend. I have had plenty of crushes and been interested in plenty of men, but I have always told myself that I don't want to burden someone with my problems. In college I convinced myself that "I don't have time for a boyfriend" but now that many of my current grown-up goals in life are stable, I am the only one holding myself back.
When I was around 16-17 years old I found out that I inherited a neurodegenerative disease that would dramatically shorten my lifespan and most probably be passed on to my children, if I ever have them. Since I found out I have this disease, I have been too terrified to date!
What I fear most is that as soon as I get too close to a guy, I'll have to tell them about my disease and therefore be pressuring them to decide whether or not they want to stick with someone that may pass away as early as their late 40s or 50s and may feel pressured or obligated to take care of me when I no longer have control of my body movements. Not the mention that if we ever decided to have children, the long process of assisted fertility to ensure that my children never, ever have this disease.
Even now when I see someone I like or connect with, I think to myself, they don't need all this drama in their lives! They'll find someone healthy to be happy with. I think in some way I am protecting myself from a guy who finds out I have health problems and breaks up with me as soon as I tell him.
Sorry for the long post. I've been wanting to get some suggestions or ideas as to how I could go about dating without constantly worrying about telling the other person about my condition. When is the right time? Are men (or women if you're reading this) willing to look past my disease and enjoy the relationship we have now?
most of them are not into the responsibility period, because it requires too much time and effort on their part, let alone taking care of a sick spouse.....with that said, the ones you tell who then immediately run off b/c it's not their thing or too much to handle -- weren't going to take care of you in the first place. See what I'm saying? Now I'm not telling you 'don't have children,' but hey, maybe you shouldn't. The best thing to do would be adopt an already healthy child. Why pass on a debilitating disease to them? Millions of kids out there need homes and would love to have you has a mother. You can tell these men that you cannot have children of your own, but you are open to adoption. That's my 2 cents.
You sound like a brilliant and classy woman as well as genuine. Dont ever put a lifespan on your self. You never know what the future holds. You might end up living much longer than you think. As far as a boyfriend goes, be up front and hold nothing back if the man you want is genuine like you he will stand by your side. You know a lot of men nowadays are a Pandora's box and the fact that you have never dated anyone yet might be the best thing that has happened to you. The children issue is too much of a personal issue for me to even comment on. You will be the one carrying that child for nine months and going through the burden of pregnancy and labor and only you have the right to make that desicion no man should have any say so on weather any woman should or should not have children. The best of luck to you and please keeo us posted.
OP, how are your mother and grandmom today? Seems their health are OK, isn't it? Have you gotten a second or third opinion about your diagnosis?
The society tends to blindly give doctors, and any experts, too many credits than they deserve. Only to have their opinions or "best practices" proven wrong later. Sometones centuries later.
Have you read the book Dance with Chance? About the medical part.
Grandmother died at an early age, 3 of her children have also passed while in their early 50s, and my mother has been symptomatic since her 40s and is not doing well (we take shifts as her full time caregiver). I have seen several doctors... And received the same results each time (the diagnosis relies on blood tests, CAT scans, and family history. I've never heard of that book... What's it about?
Quote:
Originally Posted by Pammyd
Don't be sorry for the long post. Sometimes we don't have anywhere else to go to look for ideas and for me so far this has been a great forum. Now, to start with, why don't you do some research on what you have going on medically and find a doctor who may be able to help you out? Medicine changes daily that is for sure and there is always hope so don't sell yourself short on that one. You don't have to go into full blown medical details with anyone you date unless the dating becomes long term or serious, then I would talk it over with them. Not a big deal about fertility either. There are plenty of children out there who would love to have an adopted family to love, so there is that optionas well. I believe you have to stop thinking so far ahead when you meet someone and just enjoy the moment. You are not going to marry the first person you meet so go out and have some fun and wait until the right one does come along. My second husband came to me having had 5 heart attacks at a young age. I fell madly in love with him and knew he had a bad heart. He constantly had nitroglycerin in his pocket and at times would have to be taken to the emergency room. God, how I love this man. He told me point blank that I had to be aware he did have a bad heart before he asked me to marry him. Again, I overlooked his issue. We married in September of 1991. In June 1992, he had a massive heart attack and almost died. When I went to see him in the hospital, he told me,...."I fully expect you to get on with your life should this not go as we want it to". Of course I didn't want to hear that. Before he died, he did tell me "thank you for loving me"..it was heart wrenching. He died in his sleep at home, peacefully, lovingly and I was blessed to have had him for such a short time..he was 42 years old. See, life can bring you joy no matter for how long and no matter for what reason. God put me into his life to bring him joy just like God will put someone into yours. Don't hold yourself back any longer..time waits for no one that is for sure and I do believe you are wasting some valuable time! Good luck and get out there and make someone happy!!
I'm so terribly sorry for your loss! That's the exact kind of relationship that I want... Someone who isn't afraid if the scary questionable future or at least willing to give it a run for the money in hopes of finding live and happiness (although I'm still trying to shut out the reality of the future). If you don't mind me asking, did you ever regret pairing with someone who you knew might be gone at an early age? Would you still make that choice today if you could go back in time?
Quote:
Originally Posted by Doll Eyes
most of them are not into the responsibility period, because it requires too much time and effort on their part, let alone taking care of a sick spouse.....with that said, the ones you tell who then immediately run off b/c it's not their thing or too much to handle -- weren't going to take care of you in the first place. See what I'm saying? Now I'm not telling you 'don't have children,' but hey, maybe you shouldn't. The best thing to do would be adopt an already healthy child. Why pass on a debilitating disease to them? Millions of kids out there need homes and would love to have you has a mother. You can tell these men that you cannot have children of your own, but you are open to adoption. That's my 2 cents.
That's kinda what I'm questioning at this point; should I try to date men who are 5 to 10 years older in hopes of them wanting more stability and not wanting to feel tied down or pressured too early? I do really like the idea of adoption and plan to adopt a child even if I don't find a husband. I never exactly wanted to physically have children, but it's like as soon as I found out I have the disease and many don't have children, I wanted to at least see what my realistic options are. At this point in my life, I don't think I will physically have a child, but I certainly don't want to tell a potential mate that I don't want children only to change my mind years later.
Quote:
Originally Posted by 1orlando
You sound like a brilliant and classy woman as well as genuine. Dont ever put a lifespan on your self. You never know what the future holds. You might end up living much longer than you think. As far as a boyfriend goes, be up front and hold nothing back if the man you want is genuine like you he will stand by your side. You know a lot of men nowadays are a Pandora's box and the fact that you have never dated anyone yet might be the best thing that has happened to you. The children issue is too much of a personal issue for me to even comment on. You will be the one carrying that child for nine months and going through the burden of pregnancy and labor and only you have the right to make that desicion no man should have any say so on weather any woman should or should not have children. The best of luck to you and please keeo us posted.
Thank you so much for the kind words! It may sound silly but I think I'm more terrified of a future boyfriend telling their parents and family about my condition and they too judging me. I've actually had relatives that their significant others were forced to break up by their family because we weren't seen as being good enough or a liability to their future. But like many have said, I need to just think of what good may be waiting out there rather than focusing in the select few who would not be compatible (but it's still tough).
You said there's a support group not far away, get to that. We can only be so helpful, other sufferers will really be able to offer to much more.
Families can be dysfunctional in all sorts of ways, sounds like you have the double whammy of an inherited illness and a family who cope with it in a dysfunctional way. It doesn't have to be like this. Therapy can be about the present and the future, not necessarily the past, it would really help you so find the money.
Well it's official, I'm almost in my mid-20s, have a successful career, and have never, EVER gone on a date or had a serious boyfriend.
I always told myself in my later high school years and throughout college that I want to stay focused on my school work and finding jobs rather than looking for a boyfriend. I have had plenty of crushes and been interested in plenty of men, but I have always told myself that I don't want to burden someone with my problems. In college I convinced myself that "I don't have time for a boyfriend" but now that many of my current grown-up goals in life are stable, I am the only one holding myself back.
When I was around 16-17 years old I found out that I inherited a neurodegenerative disease that would dramatically shorten my lifespan and most probably be passed on to my children, if I ever have them. Since I found out I have this disease, I have been too terrified to date!
What I fear most is that as soon as I get too close to a guy, I'll have to tell them about my disease and therefore be pressuring them to decide whether or not they want to stick with someone that may pass away as early as their late 40s or 50s and may feel pressured or obligated to take care of me when I no longer have control of my body movements. Not the mention that if we ever decided to have children, the long process of assisted fertility to ensure that my children never, ever have this disease.
Even now when I see someone I like or connect with, I think to myself, they don't need all this drama in their lives! They'll find someone healthy to be happy with. I think in some way I am protecting myself from a guy who finds out I have health problems and breaks up with me as soon as I tell him.
Sorry for the long post. I've been wanting to get some suggestions or ideas as to how I could go about dating without constantly worrying about telling the other person about my condition. When is the right time? Are men (or women if you're reading this) willing to look past my disease and enjoy the relationship we have now?
glad i'm not alone, i'm in the same age-range as you and have never had a girlfriend, never been in a relationship
Well it's official, I'm almost in my mid-20s, have a successful career, and have never, EVER gone on a date or had a serious boyfriend.
I always told myself in my later high school years and throughout college that I want to stay focused on my school work and finding jobs rather than looking for a boyfriend. I have had plenty of crushes and been interested in plenty of men, but I have always told myself that I don't want to burden someone with my problems. In college I convinced myself that "I don't have time for a boyfriend" but now that many of my current grown-up goals in life are stable, I am the only one holding myself back.
When I was around 16-17 years old I found out that I inherited a neurodegenerative disease that would dramatically shorten my lifespan and most probably be passed on to my children, if I ever have them. Since I found out I have this disease, I have been too terrified to date!
What I fear most is that as soon as I get too close to a guy, I'll have to tell them about my disease and therefore be pressuring them to decide whether or not they want to stick with someone that may pass away as early as their late 40s or 50s and may feel pressured or obligated to take care of me when I no longer have control of my body movements. Not the mention that if we ever decided to have children, the long process of assisted fertility to ensure that my children never, ever have this disease.
Even now when I see someone I like or connect with, I think to myself, they don't need all this drama in their lives! They'll find someone healthy to be happy with. I think in some way I am protecting myself from a guy who finds out I have health problems and breaks up with me as soon as I tell him.
Sorry for the long post. I've been wanting to get some suggestions or ideas as to how I could go about dating without constantly worrying about telling the other person about my condition. When is the right time? Are men (or women if you're reading this) willing to look past my disease and enjoy the relationship we have now?
i'm 24 and in the same boat, except i've never had a girlfriend
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