I feel like the only insane person for being sane.
April 18, 2014 6:35 PM Subscribe
My girlfriend, her parent, and her entire family are 100% convinced that one of her parents has an incurable terminal disease. The catch? None of the test results have come back. In fact, none of the tests have even been done.
I feel like a complete crazy person, and the odd man out for being the only person involved in this entire situation who thinks "Maybe we should wait to assume everything is totally fucked and ruined?"
This is a genetic disease which grandparent/her effected parents parent had, and died from rather suddenly. Not cancer or anything like that.
Everyone is running around screaming and crying and making end of life plans. My girlfriend has taken a leave of absence from work. This entire situation started because of webmd and wikipedia type internet searches, and a fairly rude/blase doctor who went "Hmm, maybe it could be that... i don't know. you need to see a geneticist and run some tests, here's a referral"
So to make a clear question, how do i respond to this in a "Maybe we should wait to act this way until we know for sure" way without sounding like an ass who doesn't care? Is that even what i should be trying to do? What's my best course of action here? the entire thing seems SUPER chicken little and i've just been zipping my lip after bringing it up a few times.
Because, from my perspective, everyone is drastically irrationally freaking out. Every time i bring that up i just get a gruff "If we wait that long, by then it will be too late to start preparing!" type of response. And very soon, decisions may be made like quitting jobs or selling property and such that can't be easily undone. I'm getting text messages about stuff like doctor assisted suicide, and it all just seems SO premature and extreme. And i'm sort of married to the situation...
I feel like a complete crazy person, and the odd man out for being the only person involved in this entire situation who thinks "Maybe we should wait to assume everything is totally fucked and ruined?"
This is a genetic disease which grandparent/her effected parents parent had, and died from rather suddenly. Not cancer or anything like that.
Everyone is running around screaming and crying and making end of life plans. My girlfriend has taken a leave of absence from work. This entire situation started because of webmd and wikipedia type internet searches, and a fairly rude/blase doctor who went "Hmm, maybe it could be that... i don't know. you need to see a geneticist and run some tests, here's a referral"
So to make a clear question, how do i respond to this in a "Maybe we should wait to act this way until we know for sure" way without sounding like an ass who doesn't care? Is that even what i should be trying to do? What's my best course of action here? the entire thing seems SUPER chicken little and i've just been zipping my lip after bringing it up a few times.
Because, from my perspective, everyone is drastically irrationally freaking out. Every time i bring that up i just get a gruff "If we wait that long, by then it will be too late to start preparing!" type of response. And very soon, decisions may be made like quitting jobs or selling property and such that can't be easily undone. I'm getting text messages about stuff like doctor assisted suicide, and it all just seems SO premature and extreme. And i'm sort of married to the situation...
I can't advise you on the girlfriend but you should let everyone react however they want. You would have to be super close for it to be okay to insert yourself in what could be a terrifying time.
But also, it's easy to be rational when t's not your blood who's going through a scary time. Maybe cut them some slack.
posted by Aranquis at 6:49 PM on April 18, 2014 [10 favorites]
But also, it's easy to be rational when t's not your blood who's going through a scary time. Maybe cut them some slack.
posted by Aranquis at 6:49 PM on April 18, 2014 [10 favorites]
I hear your frustration. Speaking as a person whose family has faced the potential terminal disease of a parent, and someone who was once told by a blasé, idiot doctor at an urgent care appointment that I probably had ovarian cancer (spoiler alert: I didn't), I have to tell you that when even the possibility that you or someone you love that much might die soon emerges, dealing with the situation with cool rationality is not always the first reaction. It is okay for them to be scared and preparing themselves for the worst case scenario. Sometimes running around like chickens with heads cut off for awhile before getting down to brass tacks is part of the coping process for people. This is okay.
I agree that first stop for them should be getting the tests done and assessing the reality of the situation, but I also agree with the previous poster--first stop for you is not to insert yourself into this situation. Especially if the kind of condescension you are expressing here is coming across. That will not be helpful to them during what is emotionally (if not certainly rationally) a tough time. A good thing to say to your girlfriend might be "I know this is a tough time, and I really hope your mom is okay. Please let me know if I can do anything to support you." And leave it there.
posted by anonnymoose at 6:56 PM on April 18, 2014 [9 favorites]
I agree that first stop for them should be getting the tests done and assessing the reality of the situation, but I also agree with the previous poster--first stop for you is not to insert yourself into this situation. Especially if the kind of condescension you are expressing here is coming across. That will not be helpful to them during what is emotionally (if not certainly rationally) a tough time. A good thing to say to your girlfriend might be "I know this is a tough time, and I really hope your mom is okay. Please let me know if I can do anything to support you." And leave it there.
posted by anonnymoose at 6:56 PM on April 18, 2014 [9 favorites]
If I were you, I would be supportive and loving, listen, and do my very best to empathize with these people who've just been traumatized by a.) loss; b.) loss due to something that they don't understand and cannot control which c.) could easily affect any and all of them because it's a genetic thing.
It's easy for you to sit by and judge how they're responding because you're not a blood relative. When a friend of mine had cancer, his wife sent loooooooooooong emails to all of us making what seemed to us, his cohort, oddly specific demands of people who came to visit. No talk about the Yankees because her husband was a Mets fan. Do not mention cancer. Do not mention hair loss. Do not come if you can't drive. Bring a full meal, not just snacks, and bring it in biodegradable, environmentally responsible packaging. Only organic foods. Don't expect to watch TV; he needs the TV and to be in the TV room to be comfortable, please expect to entertain yourselves, please clean the house when you come, and make sure you use only this and that organic, non-toxic, etc., etc., and on and on. And you know what? That was their right and what they needed to do at the time. Nobody said anything. About six months into their ordeal his wife started apologizing to people for those e-mails. To a person, everyone acted as if they had no idea what she was talking about.
They'll come up for air when they can. In the meantime, practice saying things like, "Hmmm. I'll need to think about that for awhile. I want you to be happy and feel safe so, if making an end of life plan right now seems like the best thing to do, let's think it through and make a plan." Keep saying that sort of thing in one form or another. But mostly? Listen. Stay on the back foot. Be present and non-judgmental. Be patient. This part of the grief process will pass.
posted by TryTheTilapia at 7:03 PM on April 18, 2014 [16 favorites]
It's easy for you to sit by and judge how they're responding because you're not a blood relative. When a friend of mine had cancer, his wife sent loooooooooooong emails to all of us making what seemed to us, his cohort, oddly specific demands of people who came to visit. No talk about the Yankees because her husband was a Mets fan. Do not mention cancer. Do not mention hair loss. Do not come if you can't drive. Bring a full meal, not just snacks, and bring it in biodegradable, environmentally responsible packaging. Only organic foods. Don't expect to watch TV; he needs the TV and to be in the TV room to be comfortable, please expect to entertain yourselves, please clean the house when you come, and make sure you use only this and that organic, non-toxic, etc., etc., and on and on. And you know what? That was their right and what they needed to do at the time. Nobody said anything. About six months into their ordeal his wife started apologizing to people for those e-mails. To a person, everyone acted as if they had no idea what she was talking about.
They'll come up for air when they can. In the meantime, practice saying things like, "Hmmm. I'll need to think about that for awhile. I want you to be happy and feel safe so, if making an end of life plan right now seems like the best thing to do, let's think it through and make a plan." Keep saying that sort of thing in one form or another. But mostly? Listen. Stay on the back foot. Be present and non-judgmental. Be patient. This part of the grief process will pass.
posted by TryTheTilapia at 7:03 PM on April 18, 2014 [16 favorites]
My best friend has a very serious case of ovarian cancer, so I've been dealing with something analgous to what you're experiencing. Some people in our circle, from the very start, have just freaked the eff out. And it's so profoundly unhelpful to the process.
It seems to me that much of the freaking out has to do with the fear of the unknown, a feeling of being utterly overwhelmed by emotions, and being utterly overwhelmed by the process ahead of us, with all its complicating factors like test results and doctors and hospitals and clinical trials and non-traditional medicine and…and…and… The list can go on forever.
My thoughts for you: first of all, completely write-off your girlfriend's parents and family. They're not your problem to fix. Concentrate on your girlfriend. Sit down with her at a time that's good for both of you -- not when deadlines are pressing, or family is near, or other shit needs to happen -- at a quiet time, and talk through this with her. Maybe even in bed with the lights out. Talk about how scared she is. Ask her what she worries about the most (maybe that she carries this gene?!? or her parents do?!? or she will be overwhelmed with responsibilities during this illness?!? or that she will lose her job because she'll be absent too much?!?). Ask her how she sees the process unfolding. Get her to unload some of her stress onto you. Then ask her how you can help her feel better. Just that -- "How can I help you feel better?" If she says there's nothing you can do, press her. Can you…do the laundry? Take her to a silly movie to distract her? Bring her a favorite sweet? Just settle into her stress and try to meet her where she is now.
If she's open to exploring this, you can also try to process the feelings in this way which has proven very helpful for me in dealing with my friend's illness: Think into the future, along a timeline. What is at the other end of all of this? There are two scenarios. In one, the guy turns out not to be sick, he is well, and everyone is happy. In the other, he is sick.
Okay, let's think that timeline through further. He gets sicker. So, go farther down the timeline. He dies. Horrible. Let's go farther down the timeline. We are all collectively sad…there are logistical things to deal with -- a will? Property? The funeral? Family fighting or dealing with this together? Are there children? Now go even farther. We slowly get over this. We are at the one year anniversary of his death. What is everybody doing? What's everybody doing two years later? Try to get her to a point where she can see the other side of this crisis. One day it will be finished. We will all be happy again. We will fondly remember this guy and how much he meant to us.
TLDR; explore the stress to relieve it.
posted by BlahLaLa at 7:36 PM on April 18, 2014 [3 favorites]
It seems to me that much of the freaking out has to do with the fear of the unknown, a feeling of being utterly overwhelmed by emotions, and being utterly overwhelmed by the process ahead of us, with all its complicating factors like test results and doctors and hospitals and clinical trials and non-traditional medicine and…and…and… The list can go on forever.
My thoughts for you: first of all, completely write-off your girlfriend's parents and family. They're not your problem to fix. Concentrate on your girlfriend. Sit down with her at a time that's good for both of you -- not when deadlines are pressing, or family is near, or other shit needs to happen -- at a quiet time, and talk through this with her. Maybe even in bed with the lights out. Talk about how scared she is. Ask her what she worries about the most (maybe that she carries this gene?!? or her parents do?!? or she will be overwhelmed with responsibilities during this illness?!? or that she will lose her job because she'll be absent too much?!?). Ask her how she sees the process unfolding. Get her to unload some of her stress onto you. Then ask her how you can help her feel better. Just that -- "How can I help you feel better?" If she says there's nothing you can do, press her. Can you…do the laundry? Take her to a silly movie to distract her? Bring her a favorite sweet? Just settle into her stress and try to meet her where she is now.
If she's open to exploring this, you can also try to process the feelings in this way which has proven very helpful for me in dealing with my friend's illness: Think into the future, along a timeline. What is at the other end of all of this? There are two scenarios. In one, the guy turns out not to be sick, he is well, and everyone is happy. In the other, he is sick.
Okay, let's think that timeline through further. He gets sicker. So, go farther down the timeline. He dies. Horrible. Let's go farther down the timeline. We are all collectively sad…there are logistical things to deal with -- a will? Property? The funeral? Family fighting or dealing with this together? Are there children? Now go even farther. We slowly get over this. We are at the one year anniversary of his death. What is everybody doing? What's everybody doing two years later? Try to get her to a point where she can see the other side of this crisis. One day it will be finished. We will all be happy again. We will fondly remember this guy and how much he meant to us.
TLDR; explore the stress to relieve it.
posted by BlahLaLa at 7:36 PM on April 18, 2014 [3 favorites]
I hear what you're saying, but they may be right about testing possibly taking too long if it's a disease that is basically diagnosed by ruling out everything else. While I agree that no one should be quitting their job just yet, there is nothing wrong with doing some practical and mental preparation for the worst. They likely all went through this before with the grandparent, and know now what they would have done differently.
posted by amro at 7:47 PM on April 18, 2014 [2 favorites]
posted by amro at 7:47 PM on April 18, 2014 [2 favorites]
They also might want to hold off on testing because they think they know what the answer will be, but they need a little more time to process before they know for sure. It's one thing to freak out about a possible death sentence and another thing to freak out once there is no hope at all of getting a reprieve. That may seem irrational to you, but you're not the one facing your own mortality here. I understand not wanting to do the tests right away. Once you know you can't un-know it, and it takes a lot of people some time before they're ready to face that knowledge.
posted by ArbitraryAndCapricious at 8:00 PM on April 18, 2014 [4 favorites]
posted by ArbitraryAndCapricious at 8:00 PM on April 18, 2014 [4 favorites]
So to make a clear question, how do i respond to this in a "Maybe we should wait to act this way until we know for sure" way without sounding like an ass who doesn't care? Is that even what i should be trying to do? What's my best course of action here? the entire thing seems SUPER chicken little and i've just been zipping my lip after bringing it up a few times.
It's OK that your girlfriend and her family are freaking out and trying to prepare for a worst-case scenario. It sounds like they've already seen at least one family member sicken and die from this same disease, and the fear and grief coming up now are intertwined with their family history and shared experience -- history and experience that you weren't around for and aren't going to completely understand. Additionally, since this is genetic, many other members of the family (including your girlfriend?) may have the possibility of being effected, and that's going to color their reactions, too. Just let everyone feel what they feel. Try not to second-guess your girlfriend's or her family's reactions, because you've got the least experience and have the least at stake in this situation, so your feelings and opinions are the least informed and carry the least weight (in other words, be humble).
Try to be sensitive to your girlfriend's emotional needs, not what you see as the practical needs of the situation. You're in this as her boyfriend, not The Problem Solver -- this isn't your problem to solve, you just need to be her rock. Make sure that your girlfriend knows that you're dependable, she can count on you, you've got her back. Ask her what she needs, ask her if there's anything you can do for her (including completely practical things, like picking things up at the store or giving someone a ride or running errands), and just try to *be there* for her as much as possible. Be her (literal) shoulder to cry on.
posted by rue72 at 8:05 PM on April 18, 2014 [3 favorites]
It's OK that your girlfriend and her family are freaking out and trying to prepare for a worst-case scenario. It sounds like they've already seen at least one family member sicken and die from this same disease, and the fear and grief coming up now are intertwined with their family history and shared experience -- history and experience that you weren't around for and aren't going to completely understand. Additionally, since this is genetic, many other members of the family (including your girlfriend?) may have the possibility of being effected, and that's going to color their reactions, too. Just let everyone feel what they feel. Try not to second-guess your girlfriend's or her family's reactions, because you've got the least experience and have the least at stake in this situation, so your feelings and opinions are the least informed and carry the least weight (in other words, be humble).
Try to be sensitive to your girlfriend's emotional needs, not what you see as the practical needs of the situation. You're in this as her boyfriend, not The Problem Solver -- this isn't your problem to solve, you just need to be her rock. Make sure that your girlfriend knows that you're dependable, she can count on you, you've got her back. Ask her what she needs, ask her if there's anything you can do for her (including completely practical things, like picking things up at the store or giving someone a ride or running errands), and just try to *be there* for her as much as possible. Be her (literal) shoulder to cry on.
posted by rue72 at 8:05 PM on April 18, 2014 [3 favorites]
If I had a 50% chance of huntington's, I would freak out prior to any testing.
Or I might not. I don't know. But I would definitely be pissed if you tried to tell me my emotional reaction was wrong.
posted by J. Wilson at 8:07 PM on April 18, 2014 [29 favorites]
Or I might not. I don't know. But I would definitely be pissed if you tried to tell me my emotional reaction was wrong.
posted by J. Wilson at 8:07 PM on April 18, 2014 [29 favorites]
If it's something that tends to kill suddenly, then I think it's at least very relevant, yes, to make sure that one's affairs are in order when it's even a significant possibility. The thing about "maybe we should wait until we know for sure" is that it assumes that there's a certain "safe" period that you can hang out and do nothing before this kicks in, and there are some things where you really can't. I do hope they follow through with having the tests done and whatnot, but if this person has family who care about them, then look, quitting a job or selling a house is not going to ruin them, they will still have family who care about them afterwards and they will be okay. On the other hand, if they do have something that is going to drastically shorten life expectancy, than the quality of the coming weeks/months matters a lot, and that's why people are prioritizing that over anything else.
I think you can certainly be a voice to remind that obviously these tests and such still need to be run, but stay out of the realm of "and you're just overreacting", because it sounds like they're trying to make sure that everything's in place before stuff gets bad, and there's sometimes not a lot of time to arrange that.
The time between when we found out my grandmother probably had cancer and when my grandmother became unable to express her own desires for her care was very short, and treating it like we had a lot of time very likely resulted in her spending several extra months in pain in hospice care. Not that it won't suck if it turns out this person has to find a new job after all, but it'll suck way less than not being prepared if they really have whatever they're afraid of having.
posted by Sequence at 8:14 PM on April 18, 2014 [4 favorites]
I think you can certainly be a voice to remind that obviously these tests and such still need to be run, but stay out of the realm of "and you're just overreacting", because it sounds like they're trying to make sure that everything's in place before stuff gets bad, and there's sometimes not a lot of time to arrange that.
The time between when we found out my grandmother probably had cancer and when my grandmother became unable to express her own desires for her care was very short, and treating it like we had a lot of time very likely resulted in her spending several extra months in pain in hospice care. Not that it won't suck if it turns out this person has to find a new job after all, but it'll suck way less than not being prepared if they really have whatever they're afraid of having.
posted by Sequence at 8:14 PM on April 18, 2014 [4 favorites]
I think you need to change your thinking from "I need my girlfriend to calm down, it could be nothing" to "Yes, this could be incredibly serious, which is why it is absolutely imperative that your No. 1 priority is to get your parent to a specialist who can get a treatment plan in place as soon as possible. Let's start researching who the best doctors/hospitals are for this disease and see how soon they can schedule an appointment..." Time is of the essence. Even diseases that are ultimately terminal don't necessarily progress at the same rate and medicine has come a long way since grandma/grandpa died. WebMD can't tell you about the latest clinical trials, etc etc...
Right now everyone is running around in a panic not really knowing what to do other than drop everything and go running to the parent. Try to get her mind focused on persuading and assisting her parent into getting quality medical attention immediately.
You need to stop denying their truth and even if you don't buy it quite yet, you need to just suspend your disbelief and go ok s/he has this disease.
Who knows what is actually going on here. You could be right, this is all insane, but then again they appear to have a direct relative with a potentially hereditary disease and what could be the symptoms of that disease. It isn't crazy to be seriously concerned. It is crazy to not be running to the best doctor you can find as soon as possible.
posted by whoaali at 8:31 PM on April 18, 2014 [9 favorites]
Right now everyone is running around in a panic not really knowing what to do other than drop everything and go running to the parent. Try to get her mind focused on persuading and assisting her parent into getting quality medical attention immediately.
You need to stop denying their truth and even if you don't buy it quite yet, you need to just suspend your disbelief and go ok s/he has this disease.
Who knows what is actually going on here. You could be right, this is all insane, but then again they appear to have a direct relative with a potentially hereditary disease and what could be the symptoms of that disease. It isn't crazy to be seriously concerned. It is crazy to not be running to the best doctor you can find as soon as possible.
posted by whoaali at 8:31 PM on April 18, 2014 [9 favorites]
I don't think it would be right to let all this go down without doing everything you could to get that test done.
If you can do that without hurting anybody's feelings or stepping on toes, wonderful.
If not, then not: do it anyway. Be the bad guy if you have to. Be willing to be declared persona non grata in that family if you have to.
Not for your sake, but for theirs--for the sake of your girlfriend, in fact, because if it's the kind of thing that can kill one of her grandparents, and have this much potential to kill a parent, it's hanging over your girlfriend's head, too, and could affect any kids she might have.
posted by jamjam at 9:01 PM on April 18, 2014 [2 favorites]
If you can do that without hurting anybody's feelings or stepping on toes, wonderful.
If not, then not: do it anyway. Be the bad guy if you have to. Be willing to be declared persona non grata in that family if you have to.
Not for your sake, but for theirs--for the sake of your girlfriend, in fact, because if it's the kind of thing that can kill one of her grandparents, and have this much potential to kill a parent, it's hanging over your girlfriend's head, too, and could affect any kids she might have.
posted by jamjam at 9:01 PM on April 18, 2014 [2 favorites]
Your girlfriend's family may be feeling powerless, and preparing and planning is one way to alleviate those feelings. If they prepare for the worst, they can't be caught off guard. However long they have to wait to see the geneticist, they can pass that time fortifying their lives for the worst possible news. It's very different to prepare for a tragedy that might happen, than preparing for a tragedy that you know will happen.
My sister's husband found out this week that he will likely die within the year. They knew he was dying, but we were all surprised that his time was this short. I know she wishes that she'd done his funeral planning, wills, etc. when they still had a glimmer of hope. Now all of the planning they have to do is a grim reminder of how little time they have left as a family.
Be understanding of how other people process their fear and grief. Your girlfriend needs your support and understanding, not you minimizing her feelings.
posted by gladly at 9:08 PM on April 18, 2014 [6 favorites]
My sister's husband found out this week that he will likely die within the year. They knew he was dying, but we were all surprised that his time was this short. I know she wishes that she'd done his funeral planning, wills, etc. when they still had a glimmer of hope. Now all of the planning they have to do is a grim reminder of how little time they have left as a family.
Be understanding of how other people process their fear and grief. Your girlfriend needs your support and understanding, not you minimizing her feelings.
posted by gladly at 9:08 PM on April 18, 2014 [6 favorites]
And very soon, decisions may be made like quitting jobs or selling property and such that can't be easily undone. I'm getting text messages about stuff like doctor assisted suicide, and it all just seems SO premature and extreme. And i'm sort of married to the situation...
Well, sure, but you're not married to her.
Your girlfriend and her family ABSOLUTELY have a right to react to this in any way they see fit, and as an outsider, your best response is to be supportive and offer your girlfriend a strong shoulder and an open ear. Offer advice only if she specifically asks it of you.
I'm sensitive to your girlfriend's situation -- my sibling and I have a hereditary disease that runs in my family, and sure, I got a little gloom-and-doom after my diagnosis, but in general we have a pretty firm family rule of making every attempt possible to strip down the drama and address our health with as much pragmatism as possible.
If you're headed toward marriage with this woman (and by extension, her family), try to very closely keep an eye on how she and her family are handling a potential crisis situation after the initial scare fades down. Not all families react this dramatically. If she's the type to fly off the handle for something that turns out to be nothing, there's a huge compatibility issue to consider.
posted by mochapickle at 9:23 PM on April 18, 2014 [1 favorite]
Well, sure, but you're not married to her.
Your girlfriend and her family ABSOLUTELY have a right to react to this in any way they see fit, and as an outsider, your best response is to be supportive and offer your girlfriend a strong shoulder and an open ear. Offer advice only if she specifically asks it of you.
I'm sensitive to your girlfriend's situation -- my sibling and I have a hereditary disease that runs in my family, and sure, I got a little gloom-and-doom after my diagnosis, but in general we have a pretty firm family rule of making every attempt possible to strip down the drama and address our health with as much pragmatism as possible.
If you're headed toward marriage with this woman (and by extension, her family), try to very closely keep an eye on how she and her family are handling a potential crisis situation after the initial scare fades down. Not all families react this dramatically. If she's the type to fly off the handle for something that turns out to be nothing, there's a huge compatibility issue to consider.
posted by mochapickle at 9:23 PM on April 18, 2014 [1 favorite]
Huntington's disease runs in my family (here's my AskMe from the time when my family was in your girlfriend's situation), which manifests the way your girlfriend's family's disease manifests: genetic, detectable by test, running cleanly from parent to child.
My experience with the disease from when I was at risk, and now still that I am no longer at risk, is that the experience of watching my grandmother decline and die from HD and knowing that I had a significant chance of dying in the same way was radically traumatizing in a way that has negatively structured huge portions of my entire adult life. I spent most of my life assuming I was a carrier, which to me meant the wrenching, agonizing destruction of everything I hold dear about my identity as smart, bookish rationalist. I nearly got a vasectomy just to not have to think about ever passing it on; I definitely planned at length my own eventual suicide once the symptoms began to manifest. It took me twenty years to start to come to terms with the entire thing (as much as I ever did) and finally get the genetic test, which was the hardest and worst thing I've ever done. On the way to get the results I was bawling, 100% convinced I was going to be told I was doomed. Reading your question I wondered if it wasn't Huntington's disease you were talking about.
So from my perspective I think you need to step back and recognize that you are operating from a position of privilege (even ignorance) with respect to how difficult this sort of thing can be emotionally. I think you should try to be someone your girlfriend can come to with her pain over this, not someone who is going to be oppositional to her as she tries to deal with the very dark thoughts she's confronting. I don't want to make assumptions about your relationship based upon the way you asked the question, but the aggressive (honestly, snide) tone you adopt here is absolutely not the tone I would adopt with her. Be understanding, be patient, be kind.
All that said, I think speaking your position outside this cycle of trauma can also be valuable. You can find out the numbers, the actual risk factors; you can encourage them to get help from experts; you can encourage them not to make any major decisions until they know for sure. But you have to be calm and respectful and you have to understand that you're entering into what for them has been a lifelong terror that's not going to suddenly dissipate just because you think they're all overreacting.
posted by gerryblog at 9:24 PM on April 18, 2014 [29 favorites]
My experience with the disease from when I was at risk, and now still that I am no longer at risk, is that the experience of watching my grandmother decline and die from HD and knowing that I had a significant chance of dying in the same way was radically traumatizing in a way that has negatively structured huge portions of my entire adult life. I spent most of my life assuming I was a carrier, which to me meant the wrenching, agonizing destruction of everything I hold dear about my identity as smart, bookish rationalist. I nearly got a vasectomy just to not have to think about ever passing it on; I definitely planned at length my own eventual suicide once the symptoms began to manifest. It took me twenty years to start to come to terms with the entire thing (as much as I ever did) and finally get the genetic test, which was the hardest and worst thing I've ever done. On the way to get the results I was bawling, 100% convinced I was going to be told I was doomed. Reading your question I wondered if it wasn't Huntington's disease you were talking about.
So from my perspective I think you need to step back and recognize that you are operating from a position of privilege (even ignorance) with respect to how difficult this sort of thing can be emotionally. I think you should try to be someone your girlfriend can come to with her pain over this, not someone who is going to be oppositional to her as she tries to deal with the very dark thoughts she's confronting. I don't want to make assumptions about your relationship based upon the way you asked the question, but the aggressive (honestly, snide) tone you adopt here is absolutely not the tone I would adopt with her. Be understanding, be patient, be kind.
All that said, I think speaking your position outside this cycle of trauma can also be valuable. You can find out the numbers, the actual risk factors; you can encourage them to get help from experts; you can encourage them not to make any major decisions until they know for sure. But you have to be calm and respectful and you have to understand that you're entering into what for them has been a lifelong terror that's not going to suddenly dissipate just because you think they're all overreacting.
posted by gerryblog at 9:24 PM on April 18, 2014 [29 favorites]
I lost my mom to cancer and it was really hard. One of the things that didn't help was that knowing this was going to be a very hard time. And yet it wouldn't have done her any good if I panicked nor was it a positive to overreact without data.
I guess one of the great things about ask Metafilter is that you get such different opinions. I never would have thought even with my own experience with deadly disease and diagnosis that the reaction to describe would be a positive so it's hard to say.
My initial thought is you're right talk to your girlfriend and help her understand that without truly knowing she's not really helping herself onr the person I'm sick. Yhis is certainly a personal opinion but had I freaked out over the potential of the bad news I will be putting myself in a worse position. I think you owe it to your girlfriend try to talk her down from the ledge right now at the very least
posted by Carillon at 2:12 AM on April 19, 2014
I guess one of the great things about ask Metafilter is that you get such different opinions. I never would have thought even with my own experience with deadly disease and diagnosis that the reaction to describe would be a positive so it's hard to say.
My initial thought is you're right talk to your girlfriend and help her understand that without truly knowing she's not really helping herself onr the person I'm sick. Yhis is certainly a personal opinion but had I freaked out over the potential of the bad news I will be putting myself in a worse position. I think you owe it to your girlfriend try to talk her down from the ledge right now at the very least
posted by Carillon at 2:12 AM on April 19, 2014
So from my perspective I think you need to step back and recognize that you are operating from a position of privilege (even ignorance) with respect to how difficult this sort of thing can be emotionally. I think you should try to be someone your girlfriend can come to with her pain over this, not someone who is going to be oppositional to her as she tries to deal with the very dark thoughts she's confronting. I don't want to make assumptions about your relationship based upon the way you asked the question, but the aggressive (honestly, snide) tone you adopt here is absolutely not the tone I would adopt with her. Be understanding, be patient, be kind.
This exactly. Gerryblog has it 100% right.
Also:
Okay, let's think that timeline through further. He gets sicker. So, go farther down the timeline. He dies. Horrible. Let's go farther down the timeline. We are all collectively sad…there are logistical things to deal with -- a will? Property? The funeral? Family fighting or dealing with this together? Are there children? Now go even farther. We slowly get over this. We are at the one year anniversary of his death. What is everybody doing? What's everybody doing two years later? Try to get her to a point where she can see the other side of this crisis. One day it will be finished. We will all be happy again. We will fondly remember this guy and how much he meant to us.
I am not your girlfriend, so YMMV, but this seems like a really bad idea to me. I almost always err on the rational side, often to the point of coldness, but I would NOT take kindly to this line of commentary. I'm an adult, so I understand that life goes on even after death...but I would not need or want to be spoken to in this manner about the death of a parent.
posted by schroedingersgirl at 5:05 AM on April 19, 2014 [7 favorites]
This exactly. Gerryblog has it 100% right.
Also:
Okay, let's think that timeline through further. He gets sicker. So, go farther down the timeline. He dies. Horrible. Let's go farther down the timeline. We are all collectively sad…there are logistical things to deal with -- a will? Property? The funeral? Family fighting or dealing with this together? Are there children? Now go even farther. We slowly get over this. We are at the one year anniversary of his death. What is everybody doing? What's everybody doing two years later? Try to get her to a point where she can see the other side of this crisis. One day it will be finished. We will all be happy again. We will fondly remember this guy and how much he meant to us.
I am not your girlfriend, so YMMV, but this seems like a really bad idea to me. I almost always err on the rational side, often to the point of coldness, but I would NOT take kindly to this line of commentary. I'm an adult, so I understand that life goes on even after death...but I would not need or want to be spoken to in this manner about the death of a parent.
posted by schroedingersgirl at 5:05 AM on April 19, 2014 [7 favorites]
I'm not sure of your location, but here in Canada you can expect to wait 18-30 months for genetic testing results. There's no rush option.
posted by tenaciousmoon at 6:56 AM on April 19, 2014
posted by tenaciousmoon at 6:56 AM on April 19, 2014
OK, so there are two things they're doing that are annoying you: making preparations for the parent's potential illness and death, and freaking the fuck out about it. Making preparations is pretty sensible, regardless, although potentially financially dangerous if, say, they clear out the retirement account assuming that the parent won't live past 60. Freaking the fuck out... well, that's their right. If that's the way they need to respond to the situation, that's what they're going to do.
I think they have a perfect right to act this way but I also think if you can't deal with that you're not a bad person. Maybe you can't be in a relationship with this woman and her family. Maybe they have problems that are too big for you to deal with, or ways of dealing with their problems that you can't handle.
I think maybe we're kind of alike: the worst-case scenario never seems that bad to me, more something to accept than something to get upset about. BUT I also always try to be ready for that worst-case scenario, so in that I'm like your girlfriend. But everyone's different, and I don't think anyone's wrong.
If I were you, the only places I'd butt in would be if your girlfriend or her family were about to do something that would have unnecessary long-term negative effects on their lives (emptying the retirement account, quitting jobs, etc.).
(Also it's really hard to tell if this is a 50% chance of Huntington's-or-other-autosomal-dominant thing or if it's something less likely. If it's Huntington's, you really really need to give them a break.)
posted by mskyle at 7:09 AM on April 19, 2014 [2 favorites]
I think they have a perfect right to act this way but I also think if you can't deal with that you're not a bad person. Maybe you can't be in a relationship with this woman and her family. Maybe they have problems that are too big for you to deal with, or ways of dealing with their problems that you can't handle.
I think maybe we're kind of alike: the worst-case scenario never seems that bad to me, more something to accept than something to get upset about. BUT I also always try to be ready for that worst-case scenario, so in that I'm like your girlfriend. But everyone's different, and I don't think anyone's wrong.
If I were you, the only places I'd butt in would be if your girlfriend or her family were about to do something that would have unnecessary long-term negative effects on their lives (emptying the retirement account, quitting jobs, etc.).
(Also it's really hard to tell if this is a 50% chance of Huntington's-or-other-autosomal-dominant thing or if it's something less likely. If it's Huntington's, you really really need to give them a break.)
posted by mskyle at 7:09 AM on April 19, 2014 [2 favorites]
And very soon, decisions may be made like ...
You are catastrophizing. Now that you understand how easy it is you should show empathy to your girlfriend. I have hypochondriacs in my extended family, so I know how tiring that can be, but you don't mention this as a pattern of behaviour. Unless you have suffered a debilitating and life-threatening illness yourself, it is hard to understand how important it is to do something to regain control over your life in the face of the betrayal of your body.
posted by saucysault at 10:20 AM on April 19, 2014 [3 favorites]
You are catastrophizing. Now that you understand how easy it is you should show empathy to your girlfriend. I have hypochondriacs in my extended family, so I know how tiring that can be, but you don't mention this as a pattern of behaviour. Unless you have suffered a debilitating and life-threatening illness yourself, it is hard to understand how important it is to do something to regain control over your life in the face of the betrayal of your body.
posted by saucysault at 10:20 AM on April 19, 2014 [3 favorites]
Every time i bring that up i just get a gruff "If we wait that long, by then it will be too late to start preparing!" type of response.
If you haven't dealt directly with end-of-life preparations, you might not know this, but...yeah. They're right. Genetic testing isn't something you can get done in an hour or two, generally speaking. And end of life preparations take a long damn time, especially when there is property to sort out.
We had about 6 months to get things in order for my father and it wasn't enough time, even though he owned no property and had no dependents. Plus, all the hours we spent waiting in line at the DMV, waiting in line at the County Clerk, waiting on hold with hospice and the banks and the credit card companies and Medicaid and... yeah, that was all time we didn't get to spend with my dad.
Your girlfriend's family has already been through this, remember? They know how much time they have, potentially. They also might be acting out of trauma that never quite resolved the first time. In the former instance they are actually being rational; in the latter, they deserve support and sympathy, not judgment.
Finally, if this is a genetic disease that goes parent-to-child, your girlfriend is confronting her own possible early death. And meanwhile her boyfriend is all, "Chillax! Why is everyone so upset?" Not. Comforting.
posted by like_a_friend at 10:46 AM on April 19, 2014 [2 favorites]
If you haven't dealt directly with end-of-life preparations, you might not know this, but...yeah. They're right. Genetic testing isn't something you can get done in an hour or two, generally speaking. And end of life preparations take a long damn time, especially when there is property to sort out.
We had about 6 months to get things in order for my father and it wasn't enough time, even though he owned no property and had no dependents. Plus, all the hours we spent waiting in line at the DMV, waiting in line at the County Clerk, waiting on hold with hospice and the banks and the credit card companies and Medicaid and... yeah, that was all time we didn't get to spend with my dad.
Your girlfriend's family has already been through this, remember? They know how much time they have, potentially. They also might be acting out of trauma that never quite resolved the first time. In the former instance they are actually being rational; in the latter, they deserve support and sympathy, not judgment.
Finally, if this is a genetic disease that goes parent-to-child, your girlfriend is confronting her own possible early death. And meanwhile her boyfriend is all, "Chillax! Why is everyone so upset?" Not. Comforting.
posted by like_a_friend at 10:46 AM on April 19, 2014 [2 favorites]
I'm not sure it's your place to do this, but here's my suggestion:
When they talk about something extreme like quitting a job or emptying an account, see if you can offer something along the same lines but only partway there.
Can he take a leave of absence or use FMLA, so he is actually leaving the job and having free days with family right now, but he might still have a chance to go back to work later.
Can they figure out what they want to do with the money and then take out only that amount? I'm guessing it's for something like a year-long trip around the world. That could maybe be shortened to a month, would still let that person see the major important things, and cost much less.
If these type of options will help them get through the time of unknowns, and if it's at all possible to get the test results back at around the same time as these interim measures expire, then there will be another round of decision-making at that time as to how to move forward with the new information.
posted by CathyG at 12:31 PM on April 19, 2014
When they talk about something extreme like quitting a job or emptying an account, see if you can offer something along the same lines but only partway there.
Can he take a leave of absence or use FMLA, so he is actually leaving the job and having free days with family right now, but he might still have a chance to go back to work later.
Can they figure out what they want to do with the money and then take out only that amount? I'm guessing it's for something like a year-long trip around the world. That could maybe be shortened to a month, would still let that person see the major important things, and cost much less.
If these type of options will help them get through the time of unknowns, and if it's at all possible to get the test results back at around the same time as these interim measures expire, then there will be another round of decision-making at that time as to how to move forward with the new information.
posted by CathyG at 12:31 PM on April 19, 2014
From a different angle, is there a way you could leverage the freaking-out to help get the tests done? Could you say something like "Yes, absolutely we should be figuring all this stuff out... Oh, you know what? I'll bet End-of-Life Company X will need to see those test results because Y reason..."?
posted by Rykey at 1:11 PM on April 19, 2014
posted by Rykey at 1:11 PM on April 19, 2014
'There's no time' does seem a rather thin explanation. 'Prepare' and 'get tested, wait for results' aren't mutually exclusive. Still, I wouldn't go messing with it. Assume the thin explanations for avoiding the test means they're not ready or that the test is irrelevant to their purposes. Also assume that no one can divine what those purposes are. All the more reason to not mess with it.
Also, are you sure you aren't taking them too seriously or literally? Lots of people do this kind of noisy and harmless wheel-spinning and most of it doesn't materialize into anything more than talk. Outside of girlfriend taking a rather non-drastic, un-doable leave of absence, you don't mention any steps the family is taking to follow through with plans to upend their lives. So yes, do keep your own chicken little in check and be open to the possibility that you are not as far outside the tornado of doom as you may think.
You're going to need a certain level of emotional dexterity here. Take the feelings seriously, take the the talk lightly. As others have suggested, it might be better to try to help nudge them into sensible preparations than to dissuade them from making any.
Loved one either has this disease or they don't. If the worst is true they will die from it. If it's not they won't. The test has no bearing on that ending. Don't waste your energies or squander family good-will agitating for something that won't change the outcome for them.
I don't blame you for being unnerved by all of this. This high an intensity of emotion from so many people so quickly would be a bit much for me. So just smile and nod and keep keeping quiet, duck away when that gets hard.
posted by space_cookie at 4:38 PM on April 19, 2014
Also, are you sure you aren't taking them too seriously or literally? Lots of people do this kind of noisy and harmless wheel-spinning and most of it doesn't materialize into anything more than talk. Outside of girlfriend taking a rather non-drastic, un-doable leave of absence, you don't mention any steps the family is taking to follow through with plans to upend their lives. So yes, do keep your own chicken little in check and be open to the possibility that you are not as far outside the tornado of doom as you may think.
You're going to need a certain level of emotional dexterity here. Take the feelings seriously, take the the talk lightly. As others have suggested, it might be better to try to help nudge them into sensible preparations than to dissuade them from making any.
Loved one either has this disease or they don't. If the worst is true they will die from it. If it's not they won't. The test has no bearing on that ending. Don't waste your energies or squander family good-will agitating for something that won't change the outcome for them.
I don't blame you for being unnerved by all of this. This high an intensity of emotion from so many people so quickly would be a bit much for me. So just smile and nod and keep keeping quiet, duck away when that gets hard.
posted by space_cookie at 4:38 PM on April 19, 2014
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posted by michaelh at 6:45 PM on April 18, 2014 [1 favorite]