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?

@5zeds

Not everyone agrees with selecting embryos in the way you describe.

And it comes with its own risks.

OMG! I can relate. I recomend you take thebull by the horns. Create your own leaflets about the medical condition and distribute them to every family memebr young and old in hard copy and online.

My father was diagnosed late in life with genetic hemochromatosis. Only after he was diagnosed did it become apparent that other members of the family had it in his generation and previous generation...yet no-one talked about it, informed each other or spread good information. Family myths of having poor livers or alcoholism being the cause were spread to explain why certain family members died young or were so sick. When we began probing the issue it became apparnt that the rural mentality of my fathers family was that they didn't want to get the reputation as that sick family because bizarely it may somehow make peopel ostraicse them or reduce chances of relationships etc...as if people would say to each other 'avoid marrying into that family because they have the entirely treatable medical disorder?'

Anyway, myself and my siblings created a leaflet about hemochromatosis. What it was, the genetic likelyhood of having it in our family/inheritence, the symptoms, possibe risks, tests to diagnose, risks, common myths and dietary plans to prevent it being an issue or relieve symptoms. We made hard copies printed out, posted to every individiual(not just households) and also emailed them around to everyone. At first the older generation were quite angry about us 'airing the dirty laundry' and 'scare mongering.' That tune quickly changed when two of my cousins in their 40s and three early 20s kids of other older cousins all went and because of testing found they had it too. The cousins in 40s now had an answer for their ill health and symptoms that had been going on for years and proper treatment, and the kids in 20s had been diagnosed early enough they could make dietary changes early enough to prevent major issues down the road and leave them with the knowledge that there a treatment (regularl blood draws) which can work if they ever become symptomatic!

I highly recommend that you do your own research, speak to doctors, get the information you need and then find a way to distribute it to your family yourself for your own piece of mind and the wellbeing of the next generation. If you can get permission of whoever in the family has the condition to inclide a "My story" section in your leaflet then this can really help bring home why it an important issue for your family do deal with openly and honestly.

*My Mum espoused the strong opinion that it was the parents' choice, that they would have to deal with it ..... when I replied that actually it's not really them who'd have to deal with it, it's it's child, she had no response other than "well yes I suppose you're right".

@5zeds

Not everyone agrees with selecting embryos in the way you describe.

But the couple concerned aren’t even aware that it is an option for them, as they don’t have the necessary information about the condition. This isn’t about the choices they have made, it’s about the fact they haven’t been given the necessary information to make a decision. And of course the mum and sister aren’t obligated to pass information on, but why wouldn’t you want to help them to make an informed decision?

@urslaB

I think you (and whoever else did this alongside you) are wonderful.

And many of the points you mentioned are definitely relevant to my Mums family.

I think, if I'm correct, that the only remaining risk of this (outside of my cousin's family who are now aware and will seemingly test their daughters and act accordingly) , that there are only 2 other individuals who could be carriers and continue this. I have messaged the one I know a little bit, with no response.
I've emphasised how age and her sister (esp her sister who had kids and grandkids whi,le she has none so far and says she v likely won't) would be wise to get tested.

I could send them info, but given the lack of response so far ....

But the couple concerned aren’t even aware that it is an option for them, as they don’t have the necessary information about the condition.
This isn’t about the choices they have made, it’s about the fact they haven’t been given the necessary information to make a decision. And of course the mum and sister aren’t obligated to pass information on, but why wouldn’t you want to help them to make an informed decision?

Sorry for bolding this but I can't seem to quote it.

It looks like they weren't made aware of any risk by returning Mum/Granny (I don't knoe what those two people's understanding of the risk was).

They, unknowingly, had two children, a boy and a girl. The boy has been relatively recently diagnosed with the disease. It sounds like during that process, the Mum and Granny did even try to point them at potential info sources like my cousins, who are affected).

(Their daughter may be a carrier but I would not affect her).

Apparently the female half of the couples sister is also a carrier, be sure sure got tested after her nephew and sisters diagnosis. She herself has two daughters who want be affected but may be carriers. I'm just relieved they're both girls (and that the other sibling of the couple this had happened to is a girl).

I presume their daughters will get tested when they're grown up.

They've had to go through all this with no info/warning/anything from their Mum and Granny.
It has apparently caused massive conflict and deterioration of the relationships.
I do thi k ot was genuine ignorance and lack of understanding on the part of the Mum & Granny

The thing is, OP, you are being very critical of your mum’s/ sister’s decision to not pass on information, but you have done the same!

I understand that when you found out as a young adult you probably still relied on your mum to communicate with the wider family (I did the same at that age), but as you got older, this didn’t change. As your female cousins / second cousins (it’s not clear) got older and were of an age to get married/ have children, it apparently didn’t occur to you that they should be told this information that you knew. That’s the part I find hard to understand. They may not have acted on the information once they were told, but at least you would have done your part by making sure they had all the information they needed.

Your mother can not understand or remember complex information, so she is unable to communicate complex information to others in the way you would like. What do you need to do to overcome your uncomfortable feelings about this? You need to develop your capacity for empathy and acceptance, and if you want to inform and support, you need to do it directly and stop using others as conduits of your will and expectations.

@Tamworth123

*But the couple concerned aren’t even aware that it is an option for them, as they don’t have the necessary information about the condition. This isn’t about the choices they have made, it’s about the fact they haven’t been given the necessary information to make a decision. And of course the mum and sister aren’t obligated to pass information on, but why wouldn’t you want to help them to make an informed decision?*

Sorry for bolding this but I can't seem to quote it.

It looks like they weren't made aware of any risk by returning Mum/Granny (I don't knoe what those two people's understanding of the risk was).

They, unknowingly, had two children, a boy and a girl. The boy has been relatively recently diagnosed with the disease. It sounds like during that process, the Mum and Granny did even try to point them at potential info sources like my cousins, who are affected).

(Their daughter may be a carrier but I would not affect her).

Apparently the female half of the couples sister is also a carrier, be sure sure got tested after her nephew and sisters diagnosis. She herself has two daughters who want be affected but may be carriers. I'm just relieved they're both girls (and that the other sibling of the couple this had happened to is a girl).

I presume their daughters will get tested when they're grown up.

They've had to go through all this with no info/warning/anything from their Mum and Granny.
It has apparently caused massive conflict and deterioration of the relationships.
I do thi k ot was genuine ignorance and lack of understanding on the part of the Mum & Granny

If they've all been tested then what is your problem?

What information and guidance do you think your mum and sister could give them that their doctors can't? Why so you think these people can't google?

If these people are aware of it, then surely the rest of the family is, as you know so much about it, so there's no issue

...if you want to inform and support, you need to do it directly and stop using others as conduits of your will and expectations.

You've clearly not read the post where I stated that my mother has lied by omission about this for months.

She lied because she knows she opposed me speaking to other members of the family about this and encouraging them to get tested for years.

I only found out about this because my sister unknowingly dropped my mother in it and started taking about it at the mothers day lunch.

God, it’s like Queen Victoria lying about her children being carriers of haemophilia….

I will never understand people like this who don't want to help future generations avoid such diseases, it doesn't make sense to me and seems so selfish. If I had a genetic condition I would want my family and children to know so that they could be prepared going forward.

As far as I can tell from your posts your family members seem to be doing exactly the same as you. That is, dealing with the situation in the way that works best for them.

It seems reasonable to state your point of view and offer the knowledge you have, but very unreasonable to judge them for preferring to make different decisions to what you think they should.

@Georgeskitchen

In terms of a potential life threatening genetic condition , maybe some people are just too afraid to know, maybe they would rather enjoy their lives as best they can now rather than have something awful in the future hanging over them. That's their choice and perhaps yoi should respect that

Not the scenario here.

If a boy were affected, it would become clear from childhood.

If a girl/woman; They are personally more or less unaffected. That's how 3 generations of my cousin's family have not known they are carriers (and didn't grt tested. It appears that rhe youngest generation would have gotten tested if they'd been informed).

If they find out they are a carrier, before they have kidd, they can prevent passing it on, using ivf.

If they find out they are a carrier, and their daughter is a carrier, their daughter can do likewise.

Tell them then

If they've all been tested then what is your problem?

See my 12.57 post (which reiterates information in earlier posts).

Every post you male would require me to repeat myself and correct you wirg stuff that's already in my poss. You've been the same worg responses to other posters. Nobody's got time (or patience) to do that for you.
.

@LndnGrl

Tell them then

What are you talking about?

Similar...
I’m infertile and was v open and frank about sperm donors Ivf and early loses believing that It was sharing is caring etc
Recently found out two people , one relative one friend are also infertile but chose to keep it top top secret like it was embarrassing or shameful or I don’t know what ??? They know I would have been helpful supportive and totally confidential I’m not a blabbermouth I understand its private And invokes a discussion about a persons genitals but come on its 2022 let’s TALK!!!!

As your female cousins / second cousins (it’s not clear) got older and were of an age to get married/ have children, it apparently didn’t occur to you that they should be told this information that you knew. That’s the part I find hard to understand. They may not have acted on the information once they were told, but at least you would have done your part by making sure they had all the information they needed.

I told the cousins I had contacted with/knew.

I tried to get my Mum to tell the cousins (aunt I suppose) I didn't have contact with.

She was extremely discouraging.

There were rifts in the family.

She said they wouldn't appreciate it.

She said I would be upsetting & victimising my aunt whose sons have the disease.

She said ot would cause conflict and fall outs in the family. She I'd still saying that now that I've messaged my cousin, who I know a little bit now.

She said it was none of my business.

She said it was up to them to do what we had done (get a genetics referral through gp etc). To some extent, I agree with that. They knew the same basic facts as us, 4 brothers, 2 nephews with the disease.

I was influenced by all that.

The granny in question has 3 unaffected sins and I thought she was extremely u likely to be a carrier.

With this recent "development", if I had lnown/been told I would have told them everything I knew and referred them to my cousins. It could have saved them from the torture of the specific daignosis wait.
I wasnt given that opportunity. My mum made sure I wasn't.

*diagnosis

@nitsandwormsdodger

Similar... I’m infertile and was v open and frank about sperm donors Ivf and early loses believing that It was sharing is caring etc Recently found out two people , one relative one friend are also infertile but chose to keep it top top secret like it was embarrassing or shameful or I don’t know what ??? They know I would have been helpful supportive and totally confidential I’m not a blabbermouth I understand its private And invokes a discussion about a persons genitals but come on its 2022 let’s TALK!!!!

It is incredibly frustrating.

I find it so sad that one of the reasons os that ppl might feel shame & embarrassment things that are so utterly not their fault, whether infertility or genetic conditions/illnesses.

@Yellowleadbetter

Op you are getting really rough ride here.

Having experience of genetic disability severe in nature requiring lifelong 24 hour care with reduced quality of life and daily pain, if genetic testing can prevent this, then why would you not go ahead and read a bit about it and do everything possible to stop it from happening.

I still see your point of view with your frustration and emotion towards the people who can put a stop to something like this happening, who are choosing to not.

It’s horrendous.

Thank you.

(And don't worry about the rough ride; im award of what aibu is like and prepared for the 1 to 3 (approximate) asshole proportion!).

My Mum espoused the strong opinion that otvwas the parents choice, that they would gave to deal with it when I replied that actually it's not really they who'd have to deal with it it's it's child, she had no response other than "well yes I suppose you're right".

Anyone who takes the risk if doing that to a child who had no choice ..... personally I think it's evil.

You seem to very firmly believe these young men would rather not have been born? It’s a commonly held belief for many who are not disabled to think disability is a fate worse than death. Yet when able people are injured they seem to forget all that and cling to a life they feel is worthwhile. I understand where you are coming from but I can’t agree.