tricky family medical (genetic) matter

[questionandanswer]

Have NC for this. I wondered if anyone has any thoughts on something that caused a family argument this Xmas. It is a medical matter. I will just give the essential info, not to make it too specific and technical, or long. Basically:

I have a DH, who has two adult daughters, my DSDs. We also have a 12yo DS together. Not long ago DH and the DSDs found out from family that DH's sister (from whom he is estranged) has been diagnosed as having a genetic condition. The condition does not affect everyday life in any way but does mean that the sufferer needs to make doctors aware of it if they have a general anaesthetic.The condition can be potentially fatal if you have a general anaesthetic using certain agents, but if the doctors know about it, alternative agents can be used and all is fine.

It is of course possible to just tell doctors about the possibility of the condition at the time of an anaesthetic, and they can use the alternative agent just in case (this happened recently when DS had to have a GA). However, the concern would be if the person is not in a position to give this history, in an accident and unconscious, say, with no family around in time (also DS is only 12 and is autistic and probably unlikely to give the history correctly even if he is conscious). So I certainly want to know if DS has it, and the DSDs want to know if they have it. If they do they would then wear a medic alert tag.

The catch is that. although some degree of genetic testing can be done, the only definitive test is a muscle biopsy, which a fairly invasive and, I believe, quite painful, test. Now, the way the conditiion is inherited, if DH was to test negative, the kids could not have it and so would be spared the testing and any further concern. So the obvious first step is for DH to see a doctor and ask for testing.

The problem is that DH is refusing. He says he will see a doctor to discuss the situation but no way will he have the biopsy. This means that 12yo DS is going to have to have the test (as even if the DSDs test and are negtaive. DS could still have it).

DH became verbally abusive and started shouting at the dining table at Christmas when i suggested he was being selfish. This was in front of the DSDs boyfriends, one of whom we only know a little and one of whom we were meeting for the first time. This was very embarrassing for me. And we are no further forward with finding out the genetic status of any of them.

I dont think IABU (unless you think I should just solve it by getting everyone medic alert tags anyway, but I don't see why DS should have to wear one if he does not have the condition).

@RandomLondoner yes I do see that, and I see that I went about this wrong under the circumstances. I do feel sorry about that. I accept I was unreasonable in that. It is not, though, as if this had never been discussed with him before, it as been, by me and the girls, all together and individually, numerous times. He has always just sought to put it off, saying he is too busy, lots going on, can't take time off etc etc. This seemed quite plausible. (especially as seeing the specialist involves significant travel, there is only one unit in the whole country). We had no idea he was actually that frightened to have the test.

I have already explained, there is no way he would ever make any medical appointment for himself.Too phobic, too dyslexic, too prine to ignore things. I have known this for 20 years. I have always sorted out his health care.

I honestly couldn’t be in a relationship with someone where I needed to act like their mother.

You can’t physically or mentally force someone to have a procedure, no matter how big or small it is.

If he doesn’t want it done then the only other option is for his DCs to get a test instead - I can’t see any other way around it.
I certainly wouldn’t be ringing the doctor on my adult husband’s behalf.

@questionandanswer it sounds like your DH behaved badly at Christmas dinner but I would say generally it is best to be extremely sensitive to how individuals might feel about genetic issues. After being very seriously ill, I discovered I have an inhereted genetic disorder (cancer related). This affects my children and parents who now need to decide whether to be tested (kids not until they are adults) and also wider family. People can feel huge, huge guilt about passing these things on to their kids (even if that is misplaced). I don't think your DH needs the extra pressure of having to confront this in a way he's not comfortable with so that his kids can potentially avoid the test themselves. Maybe he'll come round to that in time, there isn't always a need to do these tests urgently. In the meantime others can be tested if they need/want to. I think it'd be best to respect his feelings and not label him selfish. Let him cope as best he can.

@TheOriginalEmu of course he is entitled to refuse an invasive test. This is not about that. It is about my feelings about the fact that by refusing the test he is basically forcing a child to take the same invasive test, which is only 50% likely to be needed. But I am seeing more viewpoints now, for sure.

Well ,you set him up a bit there ,didn’t you ?
Why on earth demand at Xmas table ,with new people listening,that dh has the test ?
We’re you trying to embarrass him ? Set him up so he can’t say no in front of people you hope will judge him in to it ?
Wrong time ,wrong place for discussion.

Well, in fact he is forcing three people to take the test. But I am most concrened about DS obviously.

I actually think your the selfish one
Your not considering how your dh feels
He’s not JUST doing the test to find out if your ds has it
It’s a test that will tell him …if he has it ..can’t you see that ?
You come across as a bully in my eyes op

I had a genetic test, as I told the specialist when I was seen to get approval for the test I was mainly having it to avoid my 4 children and 6 grandchildren having to be tested. I do think having the test is the right thing to do but I don't think the Christmas dinner table was the right places to discuss it or to call him selfish, I have some sympathy with him getting upset although he shouldn't have got abusive. Also stating you were making an appointment for him was overstepping the mark, he's an adult.

@Summersnake

I actually think your the selfish one Your not considering how your dh feels He’s not JUST doing the test to find out if your ds has it It’s a test that will tell him …if he has it ..can’t you see that ? You come across as a bully in my eyes op

MH is usually only a problem if you don't know about it. Its not Huntingdons.

OP was very clear in her OP. This is about how she feels toward a DH who won't take a test which could save her 12 yr old autistic child from the need for a test.

I'd struggle with that as well and would be looking to him to at least commit to seeking help and treatment with what is a general medical phobia rather than fear of the condition itself.

"We had no idea he was actually that frightened to have the test."

Really?

It didn't occur to any of you-even knowing that he avoids going to the Drs as much as possible & is needle phobic?

[quote questionandanswer]@TheOriginalEmu of course he is entitled to refuse an invasive test. This is not about that. It is about my feelings about the fact that by refusing the test he is basically forcing a child to take the same invasive test, which is only 50% likely to be needed. But I am seeing more viewpoints now, for sure.[/quote]
He isn't forcing him to have the test, you've said it can be dealt with by alerting doctor if he ever needs a GA. You seem to be the one forcing it and I'm not sure they will do the test. I know with my families issue they won't test till 18.

@questionandanswer

Thanks for the input, and I am trying to see it from his point of view. He is an intelligent man but his knowldege of medical matters is very poor and he is very frightened of doctors. (Strange, he has a wife and two daughters who are all doctors!)

Can't you see how this made the situation so much worse, from his POV, and ramped up the pressure on him? I'm amazed that, as doctors, you and his DDs weren't more conscious of the sensitivities around genetic testing (I am also a doctor).

Also, as MH is autosomal dominant and his sister had it, there is (assuming it wasn't a spontaneous mutation in her) a 75% chance that your DH has it, meaning that there is a 75% chance that your DS will need to be tested anyway, regardless of whether your DH is tested.

@DreamerSeven

I think you’re massively under-estimating the impact that the thought of genetic testing can have on a person. Plus discussing it at Christmas in a group setting was a terrible thing to do, I’m not surprised he possibly felt ambushed and stormed out (not saying it was the right reaction, just that I can imagine how he may have felt).

It can be a total minefield to navigate through these things, cut him some slack and give him time to process it all.

Agree with all of the above ^

Just get your ds the test.
As a child he’ll likely recover quickly.
Your dh will have to live with the fact that he’s not willing to take pain to spare his children pain.

Sorry - 50% - brain not working.

@Summersnake yes I did go about it wrong. I agree. But it didn't start as a demand, it was part of a wider discussion about family health issues and medical appointments which needed to be made for various reasons. The DSD who mentioned the appointment (among other appointmens) needed to be made was shocked when he said no way as he going to have the biopsy. Before he had just made excuses about being too busy etc, never said he wouldn or was scared. I am afraid that when he loudly declared in front of the group that he would never have the biopsy, I did say I found it selfish. That led to him losing it. So I should not have done that. But equally, he could just have said oh yes we need to do that in the new year, and had a further discussion privately later.

I agree he may have felt a bit ganged up on, but I would hope and expect once he's calmed down he would not be so selfish as to put his son through a test which was potentially unnecessary.

If he still refuses which means your son has to have the test, then I would look at him very differently and not in good way

My dh found out as an adult his parent had HD. He knew it was in the family but his parent was given the all clear in middle age before the gene was discovered. They never went for testing after it was discovered as they were in their late 50s. A sibling of dh was later tested and positive. Up until this dh firmly believed he would've gone for testing straight away. When hit with the reality it was a very different story. We had young children and he knew for them at some stage he would be tested but he also knew at that time a positive result would stop him living a normal life long before the illness would start. We put it out of our minds until the kids were older and then for their sakes only he went for testing.
There is mandatory counselling involved and it took six months from first appt to result. The referral waiting period was quiet a few months too.
In the end he was very thankfully negative. He spared the kids the turmoil of going through testing and also freed himself of the unknown but he did it for them even though he fully expected to be positive or at best in the grey area and believed knowing would be detrimental to his own quality of life.
Time and a lot of thinking helped him get there. I don't think it's fair to judge anyone for been initially afraid and that conversation should never have happened as it did.

Discuss it with him when you're alone. Listen to him explain how scared he is. Only then offer support one step at a time. It needs to come from him so he feels in control and that you'll be with him supporting him all the way rather them telling him what to do and making him feel guilty.

In all likelihood he will do it when he doesn't feel watched and pressurised.

[quote questionandanswer]@WonderfulYou it is autosomal dominant, you cannot be a carrier

@godmum56 I have already explained, there is no way he would ever make any medical appointment for himself.Too phobic, too dyslexic, too prine to ignore things. I have known this for 20 years. I have always sorted out his health care.[/quote]
and that's fine,. but to announce it publicly?

We've been through genetic testing since DSis had breast cancer and was found to have the BRCA1 gene. My other DSis and I do not have it, but the pre-screening question was all about how I would feel (including survivor guilt if I did not have it - BTW DSis is fine after her surgery/chemo), what I would do (take it all away please), and what I would do about my own DDs and testing (advise them to get mortgages and life insurance before testing...). DH was asked how he felt about me potentially finding I had the gene - he told them that he's an engineer and you need to know what the fault is before you can work on fixing it (there may be some autistic traits in that engineer). they also cover what if your DF turns out not to be genetically your parent - these things happen

You DH may be having some of that guilt thing. I know my DF is about the gene passing down through him and he feels that he 'gave' his DD cancer. I honestly think he might have rethought having children at all if this information had been available 50 years ago, and I might never have been born. That's the strength of the fear of unwittingly having damaged your children.

And that's before the unpleasant operation to find out.

He might need time to think his way through it all. And pushing him will only make him push back harder against the idea and become entrenched. And it is up to him, no one can force him to have this procedure. IMO you need to finish up pushing him on this with acceptance and say calmly that you'd like him to, for his own sake as much as you DC's, but you appreciate he needs to think about it. And them leave it - for months if needed and maybe revisit it in the summer with a mild question.

@questionandanswer
"Well, in fact he is forcing three people to take the test. But I am most concrened about DS obviously."

He isn't forcing anyone to take the test. There are other ways to manage this without taking the test, as you've said. He's putting them in the exact position they will be in if he is positive. You are deliberately framing this in a way which I think is quite unkind. No one is forcing anyone to do anything but you appear to be trying to guilt him into doing something he doesn't want to do. He can't cope with this at the moment, and like everyone he is allowed bodily autonomy, so other family members can proceed with the knowledge they have a 50% chance and test if they want. I would also seriously consider whether your son needs to be tested while he's a child or whether, given the balance of risks, it would be better to wait until he's an adult and can make all his own choices.

Maybe he knows his sister was adopted and he wasn’t?!
I can’t think of any reason to be so adamant apart from maybe to protect another family member.

So ok, if your child is positive (and u dont know), is wearing a bracelet (not foolproof) and is unconscious therefore, cannot warn a dr if needs a GA. Therefore his/her life is at risk, if he/she has an accident is it not? Therefore your DHs actions do have a bearing........ So your children will have to be tested to be sure?
What sort of parent puts their child through any tests if they dont have to?

He is scared of the pain, I think

Right. But he's not concerned with whether or not his 12yo DS would be scared of the pain? Got it.

Sounds like a real stand up guy.

Please don't let him talk to you like that again in front of family or anyone for that matter. I'm upset and offended for you. Disgusting, immature, unnecessary behaviour.