He reveals a secret.....a genetic disorder.

**Beautiful Disaster** · 11-11-2009 08:04 AM

Karma - hmm.....your perception of me is so incorrect and I really think if you went back and read my posts on this with an open mind you'd say differently. He told me she was tested, he told me he was not tested. I never claimed any sort of conspiracy against me. This is a message forum, obviously meant to tell our deepest darkest feelings, thoughts, confusions, emotions...whether they're rational or irrational. And that is what I've done, voiced my concerns, my frustrations, my feelings, my sadness. I believe your judgement of me is unfounded, you took a stance and refuse to see anything other than that. I will respect your right to make an unfounded judgement of me if you wish but I ask that you read my posts in their entirety, not simply pulling out bits and pieces that support your one sided opinion of this situation.

**Beautiful Disaster** · 11-11-2009 08:13 AM

KMonte - thank you for your understanding of the situation. Obviously the "get tested vs don't get tested" issue is one that peoples opinions vary greatly on. And while I do think that ultimately has to be a personal decision, I do think that you have to consider others in your decision to do so or not to do so.

I'm one of those "data and facts" type of people. I like to be well informed so that I can deal with things to the absolute best of my ability. For me personally, not knowing would haunt me every day.......everything that went wrong with me I'd attribute in some way to the possibility of the disease....it would haunt me when I married, it would haunt me when I decided to conceive children knowing that I COULD be passing this on but choosing to remain ignorant to the fact. But that's me....and I realize not everyone would feel that way.

**WildChild** · 11-11-2009 10:17 AM

There is a lot to consider. You're just starting a relationship. If you were to commit to him and he did develop this condition as he required more care you could be stripped financially in order to qualify for the services he would need. You don't know he will get it. It would make more sense for both of you, if you chose to be together, to have all the information possible to plan effectively.

None of us knows what life holds for us, we can plan down to last detail and have a spanner thrown into the works that upsets it all. But that doesn't mean that we shouldn't plan. Insurance is iffy with this, if he gets tested and comes back positive he will be "rated" for general coverage, making it prohibitively expensive and may not qualify at all for LTC coverage, which if he were to develop this, would be something he will eventually need. Logically now that we have to ability to test and determine the probablity of developing things like this, we could develop a reasonable plan to deal with it. But the reality is that the information is likely to be used against us to prevent us from getting the insurance that would help, or to influence company hiring or promotion choices - holding us back in many ways. It's possible that it could be even used in determining credit worthiness. None of this may be exactly legal - but it can happen. Any information that is generated these days should be considered to have the potential to be available for public viewing. People's reluctance to get tested is understandable just from this perspective.

What should/can you plan? Everyone if at all possible should get LTC coverage and once you've had the policy for a couple years they aren't supposed to be able to cancel you unless you don't pay - however if they can prove you have or had cause to believe you have a medical condition they may be able to cancel or deny coverage even if you've had the policy for years. Insurance is supposed to be about spreading the risk but they are masters at avoiding risk. They are not alturistic organizations, they are for profit businesses. The two of you need to at least look at that.

Currently Medicare requires that you spend down your resources pretty much to poverty level before they will kick in. If you were to commit without marriage you could share a loving life together but your insurances, retirements and such would not be entwined. Really this should be the case in marriages as well, too often married people assume that (usually the man's) one's retirement/pension and insurance will take care of them both and find out they hard way, they are very wrong. Since women live longer on average, they are the one's most often left in poverty in their old age even though they may have had a loving and enduring marriage. That's with just "normal" aging or accidents, when you have a genetic condition to deal with, that's all the more reason to plan.

Some may think this is unromatic or unloving but really it's just the opposite. A loving caring person will give you the respect to make the choice to be with them but will want to minimize your difficulty and loss in the event they become disabled and in need of long term medical assistance. In many ways our society is not very emotionally mature and that is reflected in how we handle these types of situations.

**Beautiful Disaster** · 11-11-2009 01:46 PM

WC- as always your wise insight is very much appreciated. I think that sometimes societies perception of things like this is so rose colored that we often forget what is reality. Life is short, and it is imperitive that we make informed well educated decisions when it comes to our futures.

I would never force him to get tested. That would be selfish. I feel that it's important he knows how I feel about the situation, and I've been honest but reserved about it sort of just letting things happen as they do. But I can encourage him to do what is best for him, and I can be honest about what it all means to me. Basically, without saying in these words, "If you choose not to get tested, our relationship can continue but can not turn into marriage, family etc. Getting tested means knowing for sure, and being able to plan to the best of our abilities for OUR futures. Not getting tested means throwing me into the dark because that's where you choose to be.....while at the same time possibly sacrificing my life, everything I've worked for, my hopes and dreams etc.,...and I cannot allow that to happen". Again, I would not say those words.......too harsh it seems.....but that's the point I'd try to convey.

After only 4 mths in the relationship, I don't know 100% sure if this is the person I want to be with forever or not, disease or no disease. So at this point, I'm just trying not to overstep my boundaries....but also don't want to let my feelings get too involved in such an iffy situation.

I don't feel that makes me selfish, shallow, etc. I'm not the girl I used to be.....I'm a woman, I love me.......I care about me, I respect me, and I want what's best for me and my family. And I expect the man I end up spending my life with to be a MAN...to love himself, to care for himself, to respect himself, and to want whats best for himself and his family. A man that considers his woman, her welfare, her wellbeing, her future in his life.......a man well worth a chance.

**Karma3** · 11-11-2009 06:20 PM

And that is what I’ve done also, voiced my feelings….

I apologize if you feel that I am making one sided opinions and not that of yours.

Your comment:
"It's scary to think that I could fall in love with someone that would hold such secrets. Someone that might possibly knowingly sacrifice the things they know I want in a future with someone......just because they don't want me to leave. Someone that is so passive aggressive that they bottle up every resentment from birth to now, never say a word to anyone about it, and then take those resentments and insecurities out on the person they're with."
Hence, my comment about a conspiracy.

There are reasons why he hasn’t been tested. If we could all stand in line and find out our death date, would you line up?

You commented that you wouldn’t want your kids ending up with this, but didn’t you also state that he didn’t think that he wanted kids? But then you stated that he only is saying that because he possibly has the gene and that constituted him lying again. You seem to know what this guy is thinking and what he means and what he really doesn’t mean. You have analyzed this whole situation.

You know what you want and don’t want out of life, so does he, so maybe you should just lay it out on the table. Maybe you’ll find out that he seriously doesn’t want kids and you can end the relationship on that note…

**Beautiful Disaster** · 11-12-2009 08:00 AM

If just ending things is what I wanted, I could've done that already for other reasons. If that's what I wanted, I probably wouldn't be here seeking advice. Clearly, at this point in time, I do not want things to end. I just wanted some advice on how to handle the situation I am in. I have not asked him in any way to get tested. Matter of fact, we haven't spoke of this again since the night he talked about how his sister was tested and he was not. I do not allow this to be a part of our every day relationship. Is it something I think about? Yes. But until I know the best way to handle it, I most certainly don't let him know it's even an issue. As for the "conspiracy" that my feelings somehow eluded to, they were just that, feelings......not a literal "He's OUT TO GET ME!". It's the feeling of betrayal that many people feel in different situations, especially people who have deep rooted trust issues.

With HD, if you have the gene, yes it's fatal. But there is nothing that says it's fatal at 35.......it could be fatal at 80.......it's severity varies. It's an unknown, like many other things in life. But I will stand firm in my belief that we should be well informed about our situations so we can plan for our futures and the futures of our loved ones.

The best part about Womens Health forums are the responders who have the ability to empathize with the poster. It's certainly not about agreeing with what the poster says, but trying to put yourself in their shoes and try to understand what they are going through. Thats all.

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