Managing frustration with ignorant/unintelligent relatives

[Tamworth123]

This sounds terrible, I know.

I am struggling to manage my frustration and anger with close relatives who tend towards ignorance (and do pretty much nothing to change it), yet are very opinionated and verbose.

This crystallised recently when I found out that a. one of them failed to provide reassuring and useful information to other relatives going through something terrible; because they cannot grasp the basics of the subject, and have never really bothered to try (a family genetic illness/disease), and the only reason the couple were facing that in the first place was because another relative (whose behaviour mirrors my close relative;s) failed to understand & take appropriate action re. the disease i.e. testing.

Several years ago my close relative also heavily discouraged me from sharing information, seekng information and encouraging other family members to get tested, and apparently still holds that view ... despite a youg child's life now being affected by the lack of discussion, info. sharing and encouraging people to get tested. (Yes, that branch of the family may still have chosen not to, but at least we would have done our best to try).

It was obvious during the discussion taht my close relatives still have little to no grasp/understanding of the basics, still believe misinformation, and have not made any apparent effort to learn; even while they knew this was going on (and one hid it from me because she knew my views).

I know a lot of it is genuine inability to understand .... how do I manage my anger & frustration at something which I suppose is not their faults?

Some forms of eugenics are "legally happening every day all over the world". It doesn't mean everyone agrees with them

The problem in my family, as I've already stated, is not around a disagreement about preimplantation genetic testing and embryo selection; they were unaware of the possibility.

This seems familiar. Have you posted about this before?

What is the genetic disorder?

@RantyAunty

This seems familiar. Have you posted about this before?

What is the genetic disorder?

No.

Apologies, i'd rather not make this thread (even more) identifiable with the disease/disorder.

Sorry are you under the impression that those who abort to avoid bringing a disabled child or have ivf aren’t aware of what they are doing?. There are lots of different views and it doesn’t appear that you have the facility to accommodate any but your own. I expect your mother is trying to protect her siblings from your vitriolic rants. We don’t force people to have tests in the uk or damn them for making the hard choices they need to make to be happy. I’ve obviously no idea the condition that runs in your family but I’d be damn careful how you phrase things if you have living members who are experiencing it directly.

Sorry are you under the impression that those who abort to avoid bringing a disabled child or have ivf aren’t aware of what they are doing?shock.

What?!

I expect your mother is trying to protect her siblings from your vitriolic rants.

How did you guess?
I always find the best way to approach a sensitive, sad, shit subject with people i don't know well; is a vitriolic rant.
You're exactly right.

Aibu certainly brings em out.

Sometimes “they’re” here already.

Honestly if you must I would tell the people you don’t think know (assuming they are adults) and then let them live their lives how they choose.

My other half required genetic testing as I have a recessive gene which often results in early death and if not very considerable support and early death (if both partners have the same recessive gene).
We were ok and didn’t need to make any difficult decisions. But it is helpful to plan ahead and understand the consequences of any illness, genetic or otherwise.
I wouldn’t blame your relatives - the health service often checks. And as soon as they were aware of my ethnicity they offered genetic counselling if we wanted it.

@Southbucksldn

My other half required genetic testing as I have a recessive gene which often results in early death and if not very considerable support and early death (if both partners have the same recessive gene). We were ok and didn’t need to make any difficult decisions. But it is helpful to plan ahead and understand the consequences of any illness, genetic or otherwise. I wouldn’t blame your relatives - the health service often checks. And as soon as they were aware of my ethnicity they offered genetic counselling if we wanted it.

Sorry you had to go through that stress and I'm so glad you don't have to deal with anything further.

The health service unfortunately doesn't offer any checks or screening for this disease unless requested.

With respect OP, none of these tests or IVF etc are your decision to make.

@Fraaahnces

I wonder why they don’t want to know…. Surely knowledge is power. Do they think you’re courting trouble if you know too much? (Superstitious?) I recently discovered that I have Ehler’s-Danlos Syndrome. The first thing I did was book all of my kids in to have their hearts scanned. (They’re all good so far, but I need surgery.)

Sorry I missed your post early in the thread; glad to see your kids are OK and best of luck with your surgery.

@Yellowleadbetter

Ultimately it’s down to you to manage your feelings, thoughts and behaviour around the subject isn’t it. Accept that this is how it is, you are unable to change any of it or influence it. Either avoid all conversations around the subject with these people or reduce contact with them to remove yourself from the situation as much as possible.

You risk cutting off completely if you loose ypur composure with them.

Sympathies with this, I’m in a very similar boat except for if I posted about it on here, I would be ripped to shreds. (See the “judgemental “ comment above)

Thank you Yellow.

Yes, aibu is like that; maybe the health forum would be better if you ever wanted to post about it. Good luck.

(with your situation).

@Deliaskis

I don't necessarily think it's always a case of people being ignorant or unintelligent, it's people shaping their behaviours and actions around completely different priorities, for example their own need to have everybody think everything is just fine. I get frustrated that SIL and MIL won't pursue screening and potential diagnosis for ASD and related conditions for DNephew. He is clearly neuro-diverse in some way, school have recommended that they should follow this up, but MIL and SIL won't give permission or pursue any of it because they 'don't want a label' and as he's now in Y5 and it is becoming clear that he is struggling in a range of ways, they choose to blame 'that Miss x who never liked him' or 'that Mrs y who made him read those baby books' etc. Anything but to acknowledge that he might have needs that they don't understand, and that are not being met.

I don't necessarily think they are unintelligent or ignorant, but they are refusing to see the impact of their closed minded approach to it, because they think they know best, and for them, the worst thing for DNephew would be for people to know he has something 'wrong' with him, rather than the actual worst thing, which is to spend his entire school career with the odds stacked against him...something they could change.

I guess what I mean is their thinking on it is entirely centred on themselves, and how they feel about it, not on DNephew and what might be right for him. So rather than ignorance, it's self-centred thinking in their case, and keeping up appearances that everything is totally fine etc.

That's sad for your nephew.

And you make a good general point.

Another poster touched on the stigma of a label/diagnosis, within the local community etc. which can be an issue too.

I remember my late father (a very intelligent man in many ways).describing one of my cousins as not "whole", which angered me and offended me on his behalf. With views like that, no wonder other family members wanted to believe their family was unaffected/could not be affected.

@5zeds

Do you really think you know better than them how to manage their lives?

Who do you mean?

If you mean my aunt (the granny).and my cousin her daughter; their family has been ripped apart by their grand-daughter/daughter's realisation that they didn't inform her about this genetic disease and that she and her sister didn't know they could get tested before having kids to assess their risk ..... it has caused extreme damage, and their relationships will probably never be the same.

The question is not what do I think, but what is self evident?

I have great sympathy with you OP.
When my children were young we found out about a genetic disorder in the family that had not been discussed with us although other relatives knew. Luckily DCs were healthy and we were advised no testing needed unless we planned more children which, by that point, we didn't.
I must confess that I was furious with the relatives who hadn't told us.

Okay, I think I understand what happened now:

• You found out about the genetic disease several years ago when you were a young adult. You told a few family members who might be affected, but were heavily influenced by your mum’s reluctance to spread the information/ family rifts meaning you didn’t tell everyone who might be affected. And perhaps relied on your mum to tell people (her sisters) but she didn’t.
• Woman can be carriers of the disease but only men are affected by it.
• In the past few months, a family member (your cousin's daughter?) has found out that she is a carrier and her son has the disease.
• Your mum and sister did not tell you about the daughter discovering she was a carrier/ her son being ill and you only found out by accident.
• If you had found out when the son was diagnosed, you could have passed on information and put the child's mother in touch with other cousins who have the disease.
• You are angry with your mum for not telling you the recent diagnosis, and for blocking you from telling the whole family when you first found out about the disease.
• The recently diagnosed young boy is now suffering/ will suffer because of the your family’s refusal to share information.

I think you should do as @UrslaB did and create an information sheet about the disease to send to all your family. Not just the ones you think don’t know about the disease , but all of them. Surely with social media and such a large family you should be able to get contact details for the ones you’re not in contact with. I think it would be morally wrong of you not to tell them, if I’m honest. What they then do with that information is up to them.

@EllieQ

Okay, I think I understand what happened now:

• You found out about the genetic disease several years ago when you were a young adult. You told a few family members who might be affected, but were heavily influenced by your mum’s reluctance to spread the information/ family rifts meaning you didn’t tell everyone who might be affected. And perhaps relied on your mum to tell people (her sisters) but she didn’t.
• Woman can be carriers of the disease but only men are affected by it.
• In the past few months, a family member (your cousin's daughter?) has found out that she is a carrier and her son has the disease.
• Your mum and sister did not tell you about the daughter discovering she was a carrier/ her son being ill and you only found out by accident.
• If you had found out when the son was diagnosed, you could have passed on information and put the child's mother in touch with other cousins who have the disease.
• You are angry with your mum for not telling you the recent diagnosis, and for blocking you from telling the whole family when you first found out about the disease.
• The recently diagnosed young boy is now suffering/ will suffer because of the your family’s refusal to share information.

I think you should do as @UrslaB did and create an information sheet about the disease to send to all your family. Not just the ones you think don’t know about the disease , but all of them. Surely with social media and such a large family you should be able to get contact details for the ones you’re not in contact with. I think it would be morally wrong of you not to tell them, if I’m honest. What they then do with that information is up to them.

You've gone to a bit of effort to summarise all that, I appreciate it.

The only thing that I'd amend is that, while my mother did not speak to her sisters about it and discouraged me from speaking to them or my cousins about it ..... it is arguable that they could have/should have done what we did. They had the same basic information/circumstances, and could have gone to a GP and gotten a referral like we did.

(When I say we, I pushed it and my Mum went along with it. My sisters were either Ignorant/indifferent or (my eldest sister) asked her GP, at an earlier time, and was told nothing could become about it, and did not enquire further).

So while I don't agree with my Mum"s view (which sues expressed again recently) that's does done her bit for her family and the rest can do what they like, it's not up tk her etc. I do think, to some extent, they could have looked into it themselves, rather than doing (apparently) nothing.

Also I can't say I think she's entirely wrong in her (again recently reiterated) opinion that they would not have gotten tested, even if she/I had talked to them about it and encouraged testing.

I've had zero response from my cousin re my recent message either.

You have my sympathy. I don't think this is really about what they will or won't do or have or have not done. It is about you dealing with how you feel about it.
It is out of your control, what they do is their choice, I totally get it that when it impacts on others and we can clearly see another more moral and better approach then its incredibly frustrating.
Some older close members of my family are similar to yours, and this might sound awful but the only way I deal with it is to remind myself very clearly and very often that they do not have the skills, information, motivation or resources to act in a different way. They're doing what they think is right. Like how Putin and his supporters think he's in the right with Ukraine.
In a way its very accepting and compassionate - like not assuming a 10 year old will be able to manage a household budget. But it can slide into a bit of an aloof, disparaging attitude when it gets me down.
All you can do is detach. Don't let them live rent free in your head.

OK the Putin reference was OTT. But my point is that they will think they're making the correct decisions about the situation as they see it. Like voting for or against Brexit. Ykwim

@Ozanj

My mum was like this about a genetic illness that runs in my family. She isn’t uneducated, far from it, but she is thick and a conspiracy theorist. Ultimately I used shame to get her to do the right thing - I told her if she didn’t get tested and the baby got it I would tell everyone she knew it was her fault, that it was her family he got it from, and she would never see any of my kids again. So she did get tested. On the opposite end of the spectrum my mil isn’t educated past year 6 (equiv) but understood exactly why the test was needed and got the test arranged the very next day from us telling her about it.

Dear lord that's spectacularly mean. You know if the disease is genetic, your mum can't actively 'pass it on' like a cold or something? And you were going to publicly shame her? I would have told you to do one, daughter or not

Op I found out last week that there is a genetic disorder in my husbands family.

Its basically cosmetic but it’s extremely clear my 5 year old dd has it.

Mil has now told us that they knew about it. They’ve know for nearly 50 years that this is in the family and at least 3 other females have it.

I’m so angry at the moment. They knew I’d been trying various things to treat this and it’s only now we’ve seen and consultant that we even asked them a question about dhs aunt’s appearance.

Dh was never told or his sister because apparently they were ‘perfect’.

I’m not sure how I get past this. It’s not life threatening but it is really sad that we’ve been wondering for years whats going on and they knew 🥲