Aibu? husband and genetic testing.

(128 Posts)
Deemail Mon 19-Aug-13 23:09:06

My dh is at risk (50%) of inheriting a debilitating illness, if he is a gene carrier our dc will have the same risk. It is a terrible terrible illness which usually strikes between 30-45 but can be sooner or later, there is no preventative, cure or effective treatment. sad

We didn't find out that he was at risk until after we had children. Obviously when we did find out it was a huge shock. Dh felt he wasn't able for genetic testing to find out whether or not he has the gene mutation. I would have been keen to find out but understood that this wasn't something he was yet able for. We decided to wait a few years and agreed that at some point we would have to know for sure for the childrens sake, (if the illness had not already started).
It has now been a lot longer than the few years we said. The kids are teenagers and I feel we need to know for their sake. We mention the illness and family members having it and it been inherited, from time to time but they really do not understand the signifigance of it.

Aibu insisting dh has the test so we know where we stand and also where children stand. He says he wants to have it but has said that for years and has never done anything about it.
Im scared if I push him into it and it is a positive result he will blame me and also give up.. Im scared if he doesn't have it the dc will resent us in time to come for not been more honest about what lies in the future for their father and possibly themselves.

roweeena Mon 19-Aug-13 23:14:00

You have to decide - what is there to gain from knowing now, except a lot of heartache and fear. As you say it is not preventable, curable and no treatment I wouldn't feel I would gain anything other than finding out. Yes if it's negative great but If I was your DH I wouldn't want to know.

CaptainCapybara Mon 19-Aug-13 23:14:42

Why not just get your children tested and then they will know if they are affected if your DH doesn't seem to want to be tested himself?

mynameisslimshady Mon 19-Aug-13 23:17:08

I can totally see your dhs point. I'm not sure I would want to know either.

What about getting some genetic counselling for your dc and letting them decide if they want the test.

hiddenhome Mon 19-Aug-13 23:17:15

How did he not know about it until after he had children? If you dh is positive then he has a 50% chance of developing the illness.

I think that your children should be tested so they have the full picture.

Captain - the genetics of these sort of diseases is such that if, sadly, any of the children did carry the gene, the OP's DH would almost certainly be affected. So this could effectively act as a test for the DH as well.

Deemail sorry I can't give you any advice, what a horrible situation to be in.

zeno Mon 19-Aug-13 23:20:54

Have you or your dh had specific counselling for this? If not, seek out a genetic inheritance counsellor and talk it through with them. The ramifications of a positive result are life changing, so you would all need to go into it with open eyes.

We have this issue in a branch of my family, with teenagers, and they have chosen not to test. One factor was that a positive result for the father would be a barrier to the offspring for, eg, life assurance, joining the forces.

IndridCold Mon 19-Aug-13 23:21:49

Surely they would not perform a test of this importance without offering specific counselling to talk through all the implications?

Can you find out if this is available, if it is perhaps you should take it to that next stage at least.

Good luck with it all, it sounds a terrible problem to have to deal with.

Alisvolatpropiis Mon 19-Aug-13 23:22:23

Is it Huntington's OP?

That doesn't usually show itself until the sufferer is over 40, sometimes quite some time after.

I would want to know for my children's sake in your shoes. And given he is your husband and you will care for him if this illness takes hold, I think you have a right to know if he is affected too.

Alisvolatpropiis Mon 19-Aug-13 23:23:47

*30 not 40.

thatwasadaftidea Mon 19-Aug-13 23:24:54

but if the children test positive you will essentially have found out if he has it on his behalf and that is not fair.

my mother has recently been diagnosed with HD. I knew about the risk from the age of 9 when my grandmother was diagnosed, so it's been spoken about freely. i think that helped me.

testing is a huge decision and not to be taken lightly or by anyone else (including you). i would be less than impressed had my parents decided to find out on my behalf.

www.theguardian.com/society/2010/jan/16/charlotte-raven-should-i-take-my-own-life interesting article here.

Sorry, YABU. Nobody else know their future, why should he?

Deemail Mon 19-Aug-13 23:25:41

Testing is not recommended/allowed for under 18s apparently unless they are showing symptoms and it is for diagnostic reasons rather than predictive.
Even if it was allowed I would not feel comfortable making a predictive test for them. If any were positive or negative would I treat them differently? I would be taking away their choice as to whether or not they wanted to be tested yet or if I kept the testing and results a secret and it came out, how would they react, would they feel betrayed? I know from personal experience that finding out about this illness is not easy, especially when it has been kept secret. I cant imagine how my dh would have felt is he had not only found out he was at risk but had been tested and someone else had made the decision for him.

Yes it is HD. sad sad Symptoms can appear any time at any age. Parent in law did not show signs until 60s. The "typical" time frame is mid 30s to mid 40s.

Alisvolatpropiis Mon 19-Aug-13 23:27:20

Because he has had children with the OP and it doesn't just affect him?

The children have a right to know.

I would be livid to find out as an adult I had a similar illness off my own back because I was denied the testing as a child.

Is it huntingtons by any chance? Very hard as its not like you can start treatment for it or anything , a very personal thing indeed.

AdoraBell Mon 19-Aug-13 23:29:27

Hidden some families don't talk. My OH found out about his father's sever allergy to shellfish by accident when visiting FIL in hospital and they only told him that diabetes runs in both sides of the family after he was diagnosed pre-diabetic.

OP I'd say it's clear that DH doesn't want to have the test done. Why don't you do as suggested and get some advice for DCs so that they can make their own decision wrt testing?

Alisvolatpropiis Mon 19-Aug-13 23:29:57

OP

My last post wasn't directed at you.

HD is a truly terrible illness sad

I do think it is better to know it is coming though, rather than live with the worry that anything that could be a symptom is a symptom, if you see what I mean.

A difficult decision all round.

Truly hope your DH is not a carrier flowers

thatwasadaftidea Mon 19-Aug-13 23:31:58

I am in the same position as your DH. I do not wish to be tested and DH respects that. I was able to explain the risks to him before we decided to have children.

There are specific forums which you might find useful to support you as a potential carer, but my advice would be to stop worrying, what will be will be, so get on and enjoy life.

ageofgrandillusion Mon 19-Aug-13 23:32:39

I honestly think only he can decide. It is his body and his life. I think you have to respect that. If i were him i wouldnt want to know, im sure many would feel the same.

Deemail Mon 19-Aug-13 23:33:57

Yes counselling would be given. We didn't have a clue that parent in law had the illness until after we were married and had kids. It was late onset and pil had been given the all clear. When symptoms did manefist and illness was diagnosed it was kept from us for a number of years.

thatwasadaftidea, I am sorry to hear this has effected your family too. I think speaking and been open about it with dc is for the best but dh is horrified when I mention it. The secrecy around HD makes everything so much harder, its not talked about.
You think I am been unreasonable asking dh to have the test for the dc?
Dh hated all the secrecy and coverups there was in his family, he hates that it was kept hidden from us for years, as do I but on the other hand I think those years were a gift where we made decisions without HD hanging over us. My dc may never have that but on the other hand if dh has a test and its negative they will.

thatwasadaftidea Mon 19-Aug-13 23:41:40

I think you're right about the secrecy. The stigma of HD is one to be challenged IMO. I talk about it openly with friends and family, inlaws, even work etc. But then I had counselling as a teenager to explore my feelings about it after a period of depression and worry about my mother. She too hasn't developed obvious symptoms until the past few years, now in her sixties.

I know it's hard to think of, but there really are worse things. There are conditions which are debilitating throughout your life, or shorten lives. I see it as perfectly possibly to live a full long life before the symptoms start.

We have a HD advisor who is excellent. It would be worth asking for their information and support. You don't need to be tested positive to access the support I'm sure.

I think some family or individual counselling would help you all. The test is not necessarily the answer.

Deemail Mon 19-Aug-13 23:41:59

Thanks for all the replies, I am taking all on board.
There is no cure or effective treatment so been tested will not achieve any sort of prevention. I suppose deep down I am hoping dh will be clear and we will be able to give ourselves and dc the best gift ever. There is also the very small chance that testing will be inconclusive, amazingly enough 2 people in dhs family fall into this category, so even after testing they are still not sure.
Most of his family have been tested, at the time it wasn't something dh wanted and I understood and accepted this. He does say that he wants testing but hasn't done anything about it. He also wants to spare dc going through this and hopes against hope he is negative and they will not have the same worry he has had. Him been tested could possibly spare them a lot of worry and stress.
We have put it to the back of our minds for a long time and amazingly enough have been detached on a personal level. It is very very hard to watch family members both close and extended suffering and literally been destroyed by this illness.

Alisvolatpropiis Mon 19-Aug-13 23:44:43

I don't think you are unreasonable to ask him.

Such a difficult situation for all of you. The fear of it and the fear of actually knowing must be awful for DH and yourself. It would be such a weight lifted if he was tested and it was negative but knowing it is likely and knowing it absolutely will happen are so different in terms of being able to cope.

thatwasadaftidea Mon 19-Aug-13 23:45:28

I think as a teenager I was frustrated at my mum not being tested and therefore making it impossible for me to get tested without potentially finding out her future on her behalf. Although I look back now and can see that I really would not have been able to cope with that information at that age. I don't feel now, a diagnosis without symptoms would be something I could cope with either.

Partly I live life expecting that HD is what my future holds but I've got a good few years to enjoy my family and life. But I think it's taken a lot of work and counselling to get to that point of view.

Deemail Mon 19-Aug-13 23:45:32

thatwasadaftidea, I want to talk openly but my doing so would take the choice away from other people on whether or not they wanted to as we live in a smallish town where everyone knows or has heard of each other.

We have adopted a similar attitude to you and it has helped. I think as dc are getting older it is becoming more of a worry because we are aware it could strike them at anytime, I feel sick even writing that.

thatwasadaftidea Mon 19-Aug-13 23:51:24

true, i lived for a while near my sister and couldn't talk openly as she wasn't comfortable with it. i don't think it's healthy tbh.

stigma shmigma smile

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