How do you get through finding out your whole life wasn't what you thought it was?

[MiscellaneousAssortment]

How do you lay this stuff to rest?

Over the last 5yrs I have had my life's story rewritten again and again as I uncover unpleasant 'truths' that change what I thought happened, what I thought was my life, my sisters life, my family bonds, all not true.

And I'm not seeking out those truths, or trying to delve back into the past looking for answers. It's all raked up again and again because me and DS are still paying the price for it all, and our lives literally (actually literally) depend on it.

And my sister and fathers lives did depend on it, except they're dead.

I tried all evening to write a summary and it's too hard.

Basically, found out my parents always knew about the possibility of a genetic condition being passed down. They knew before they got married.

How can someone do this? Almost five decades of lies. The very foundations of my own life and the terrible tragedies that have hit our family again and again, reeling from the shock as a genetic condition slowly reeks havoc on the people I love... The lie was that anyone else was shocked and ignorant about what was happening.

Feel like the whole thing is some sick joke, and I'm the punch line.

How can parents endanger the lives of their children (sister died, I'm now severely disabled), one of themselves (dad died), and their grand child (DS may have it too)?

My mother in particular has behaved so very badly over the years, my dad was lovely though with his own problems, but kind and gentle and caring. Not very responsible though or he'd have intervened as my mother was a horrible horrible person, emotionally abusive we'd ca it these days. I can sort of see my mother doing this more than my dad, a stretch even for her, but she does have form for being breath takingly selfish and cruel. But even so, this means she was shouting and screaming that we were making it up to get attention/ doing it to upset her, how it was my fault that the family was poor/ she didn't work/ dads job was always insecure...all the time KNOWING what was happening.

She watched and bitched as her favorite daughter went through all kinds of hell, she watched her die with no diagnosis, no treatment, just terror of knowing there's something terribly wrong and no one will help.

How? I don't understand. She loved my sister so much, and my parents fell apart when she died.

And then to watch me getting iller and iller, not knowing what was happening, not knowing where to turn. Then having a grandchild, without ever thinking to tell your daughter the risk for him.

Then dad dying, they didnt tell the docs any family history, even though he was dying of what people with my condition die of. My mother behaved unforgivably at this time, cruelly and shockingly, which I thought was to hurt me (which it was but with a double whammy of being able to stop me being able to tell the hospital the family history.

I can't even start to understand how my dad went along with this?

It's like living in a snow globe and every so often someone comes along and gives it a shake, and my world turns upside down and resettles into a completely different shape.

What do I do with this? I don't know how to think or feel...

So your mum and dad separately have a condition which they have passed to you and your dsis? Does it vary in severity? Is it possible your mum has a mild version and didn't relate it to your sister having it?

I do find it odd that your poor sister didn't have a diagnosis, presumably her doctors knew about your parents and granddad?

Do you think everything else is annoying you about her because you aren't able to address the fact she withheld information from you? Is there any chance of talking about that? Family mediation in a safe way?

Noeuf it's only through my dad, so my mum doesn't have it at all.

Both were told before they married that they had a high chance of children having the condition, due to my dads family history, and a high chance of my dad dying an early death.

The first I heard of this was a couple of months ago. Right up until that point they'd told no one that they had any prior knowledge. Absolutely no hint of it and in fact my mother in particular has traded on her lack of knowledge to get attention, manipulate others and as an excuse for her cruelty and abuse.

"do find it odd that your poor sister didn't have a diagnosis, presumably her doctors knew about your parents and granddad?"

How would the docs know about my parents and granddad? My parents lied through their teeth for almost 4 decades. That's kind of the main point of the thread. They lied.

I'm not sure how I can explain it any other way?

Another poster seemed to suggest I should somehow be ok with this as its just part of her ongoing unpleasantness, or maybe I shouldn't be any more upset by this as other people have handled genetic illnesses badly too, so that should mean I should be ok with it for some reason. Missing the point that I had no idea they had the key to helping me and my sister, and it wasn't just keeping it quiet, it was the outright lies and house of cards they built which had real life consequences for me, my darling sister and now my son.

Just because I after years of therapy can now recognise her behaviour as abusive did not prepare me for this shock. It doesn't make it better that she was already a horrible woman. It doesn't insulate me from the horror of what they have done.

And the fact that they didn't know was used as an explanation for their failings over the years. An excuse that my mother used again and again to make herself into the poor little all unknowing martyr. That's her whole identity. It was the excuse given when she kept being vile and a screaming harridan at my sister (& me later) for 'making it up'. I genuinely thought she maybe did think my sister was making it up, (although was pretty damned clear it was only too real) ... But none of the carefully crafted excuses hang together if she knew what was happening all along.

That's why I'm so stunned and shocked at finding out nothing they said was true.

"Do you think everything else is annoying you about her because you aren't able to address the fact she withheld information from you?"

No, Christmasses always awful, not new this year.

Worse as my dad wasn't there to break the tension, or be nice to me, and I'm reliving the 'what was happening to him this time last year, and I can never forgive her for what she did this time last year. Ever.

This new info is devastating but it's not like we went from happy families to this with that info. I went from a survivor of abuse to drowning in the realisation that what happened was infinitely worse than the already terrible situation I was trying to get free of.

Abuse that was always excused by 'oh she couldn't deal with the terrible unexplained illness of my sister, all such a shock and such a tragedy. She was too weak and it was all such a shock and different from what she's expected that she was ill equipped to deal with it' etc etc etc.

So to find out that the very thing she traded on throughout the years as her 'poor little me' card, turns out to be a big fat lie... That's what I'm trying to deal with now.

I guess the new story of my mother is 'oh poor me, when my child got sick I decided to lie to family, friends, medics and my children, so one died without any treatment at all and the other is severely disabled and may yet die'.

Hi, I'm not picking holes just trying to understand. In your post at 6.24 (last para) you mention your mother being ill and add she does have the condition so I assumed they both did?

And I mean doctors,would know there was a history of illness surely, as you would tell them, so they would be considering genetic conditions?

Do you blame your dad as much? Would it have been easier to talk to him about what you know now?

Puzzled yes I think you are right, and people aren't as taken in as they seem.

She manipulates and lies to everyone to get them to feel sorry for her and help her, whilst keeping them at arms length so they never get a chance to see through it all. She plays people off against each other and is an expert at all this manipulation, and has done it for years but now she relies on this to get enough help to carry on living in the way she wants. So the claws have come out putting one person in the village against another. But I think she does believe it all on some level, now she hasn't got my dad to absorb all her bile and foulness.

The reason I found out the whole prior knowledge thing was because she pushed me too far and I refused to let her 'divide and conquer' and use me again. It's amazing that she didn't seem to realise that her cruelty when my dad was dying was the last time she will ever have power over me again (well, I thought so until Xmas anyway).

She was trying to use a minor op she was having to punish those nasty people who had decided to stop helping her in the village, and to punish my aunt for god knows what, and me because I'm the thing she likes to kick whenever she can - which being less these days so she was loving having something she could use to drag me back into her world again.

So when she tried it on with the usual web of secrecy and lies, I decided to ignore her wishes, phoned the hospital to tell them she had no one at home to look after her and to not discharge her unless she could cope on her own (spoilt her plan of dramatic illness when no one helped... or knew she needed help.

Then phoned her sister, my aunt, to let her know, and had a proper conversation with her for the first time in my life... and also phoned someone in the village... So spoilt all the sly manipulation bombs she had planned.

But in the process found out a lot about the lies she'd been telling, and my aunt dropped the bombshell accidentally, as she had no idea I didn't know. And another bombshell about the will but I don't care about that anyway.

Sorry, the reason I started rambling was that when I spoke to the village person (not to be confused with the village people!) she said right away, "I get the feeling all is not what it seems..."

Trouble is, I can't keep up my involvement in all that as I'm overwhelmed with everything here already, without taking on some kind of overseer lie busting role in my mothers life ...

But surely there's no need to be a "lie buster" (love it ) on your mother's behalf? It's a shame if some accept such extreme claims at face value, but it's only themselves they'll hurt by doing so. Granted they'll enjoy a "rosy glow period" being told she couldn't cope without their general wonderfulness, but when their turn comes for the knife in the back they'll be left swinging like all the rest

As we both said, most people simply aren't that gullible - and the ones who are really aren't the responsibility of someone who's got more than enough to cope with as it is

Oh I see Noeuf that would be my bad typing when upset. Rely awful typing in fact - I'm surprised anyone could read it! I can see why that would be rather confusing...

It's supposed to read:
"She has BEEN pretending to be very ill (she does NOT have the condition btw), for years"

From what the consultants I've seen (when I got ill onwards) have worked out, it appears to come straight down my dads side of the family.

I know more about my mothers side of the family as she has a sister, 3 cousins and loads of second cousins, and I was a teenager when my grandmother on that side died who was incredibly chatty! Also knew cause of death for my mothers mother (grandma) & father (grandpa) all told through family stories so, all seems perfectly normal from that side - I am somewhat less sure about this given recent revelations, but now a line is open I can check with my aunt.

My fathers has always been shrouded in mystery, (illegimacy & he had a bonkers mother - presumably why he was drawn to his wife, my bonkers mother)... and what I have learned I learnt was from my mothers bitchy stories rather than from my father directly.

"And I mean doctors,would know there was a history of illness surely, as you would tell them, so they would be considering genetic conditions?

But how would I tell them? I didn't know!!! That's the boggling thing I am trying to grapple with...

Having said that, the reason I was diagnosed quite soon after I started to get very ill was because my sisters medical history was so clearly X condition. Reading a description of the condition is like reading a biography of her. So it was on medical recent history that I could tell them, and after eliminating my mothers side by again, second hand stuff I could tell them, it just left my dad who has physical characteristics of it, & a mysterious early death of his father, that I was told no one knew (or cared) about.

There was one chance in particular I keep thinking about - when I was 13 and my sister had just got ill. We were investigated for one type of genetic illness (not the right one - is written that my parents specifically requested this one...). I found out it was because I doctor mother of my childhood best friend told my parents they urgently needed to get checked out as she suspected we had a certain type of genetic condition. Anyway that ended by my parents telling me and my sister that
A. We didn't have it
B. The consultant was awful and just wanted us 'for his paper'
C. I wasn't allowed to play with that friend anymore as she was 'too spoilt' and her mother 'looked down on us'
It's only as an adult I can link those things together, and I realize this was the closest to getting a diagnosis we came until a long time after. I believed it all and I did get my records from that time, and it said tests inconclusive but is likely there is some type of inherited condition. And a mention of another appointment... Then nothing.

So it was only after I had DS and had become severely disabled that the first diagnosis of me was given, and for my sister post-humously or whatever you call it - best guess after her death basically.

That's when I went through a year of consultants and testing to be able to tell my parents what my likely prognosis was so as 'not to upset them any more than I had to' :( more fool me.

Me & consultants also got as much info as poss in the public domain, which seemed to confirm that it came down my dads side, and possibly his dad might have died early of the same thing though PMs aren't detailed and tend to give the specific cause of death vs the condition that caused that problem to happen in the first place.

All this was 'new news' to me and knocked me for six.

Then I went to pay them a visit, complete with docs letters explaining the importance of getting checked out themselves... Which were not acted upon. Also a plea for permission for me or a consultant to access my sisters records... Never granted.

So I believed what had happened was that I had finally stumbled on the solution of one of the biggest most tragic family mysteries, and could finally explain what had happened to my sister and hopefully ease some of their guilt. As they both had said how guilty they felt as they couldn't do anything to stop my sisters illness and 'sudden unexplained death'. Then I won't recap what happened for the years after as I've typed enough already, but my mother carried on her campaign of 'she's making it up, she's lying, the docs don't know what they are talking about' about me, and my dad slowly came down more and more to help out with DS in his gentle, quiet way.

So that's what I thought happened. But really what happened was they had known from the beginning.

Oh nooo!

That should say 'Really awful typing'
Not
'Rely awful typing'

Case in point!

Oh my goodness now I get it. I thought it was more that there was mysterious illness in the family tree that you all were aware off, it was just the 'name' eluding you.
How come it is easier for you to appear able to understand why your dad would hide it from you? Do you feel maybe that was from misplaced care rather than deliberate hiding?
How odd to deny your children decent healthcare - what do you think your mother gained? A 'by proxy' type thing?
No idea how you can move forward from this, my only suggestion remains mediation so you have a safe space to try to hang onto some form of functional relationship?

I may not be at my most coherent :)

I've tried to start a OP about this ever since I found out about it but couldn't quite work out where to begin with the tangled imbroiled mess of it all.

So I ignored it until the Christmas thing made it impossible for me to forget. And lo! Very tangly emotive posts follow...

Not surprised. Maybe get the Christmas stuff out the way and think about what you want/need in the new year? I hope the aunt remains an ally no e you've found her.

Your father sounds just as guilty as your mother though.

It does sound like a kind of twisted version of Munchausen's, deliberately making your children ill(er). And she sounds like a narcissist - manipulative, everything being about her, no guilt or compassion. It must be hard to live with the knowledge that the two people who are supposed to love and protect you, have in fact been causing you harm almost your whole life (and caused your sister to suffer). It's shocking. I don't understand how you can still be in touch with her, tbh.

It's horrific.

Only you can decide if you want to talk about it or just say to yourself " that's enough now" and concentrate on the future. That's quite a big decision because to do that you have to get this woman out if your life so you can concentrate on you and your ds.

Either way, that's the end - you have to think about you first and your ds.

It may be a relief you you to think " that's enough about the past" I don't know. Neither do you I expect. Give yourself time, be v nice to yourself and whatever feeling you feel are justifiable. I don't know if you're tried mind mapping but it does help with decision making. There are free apps.

You think of a decision and map the possible outcomes/ how you cope. You can do it on the back of an envelope as well:)

I believe in one post you mentioned you are already under the care of a counselor, with this new revelation maybe you could ask for further help. biofeedback or some technique to help you move forward.

I hadn't thought about it being a bit 'by proxy' style behavior. It fits some of her behavior in a warped way...

She made a massive fuss when I was little about an ear problem I had. It was actually an ongoing issue which did cause illness and lots of operations.

But it was like an obsession and she certainly got a lot from it... Now I think about it with fresh eyes, it was an odd obsession as there were much more worrying health issues happening, which were ignored, hidden or screamed in rage about.

Lots of chastisement once no one was watching, I was (& remain) the classic scapegoat in the family & I guess, the perfect foil for her to ignore the worse health problems in the family yet still coming off as a 'caring' maternal figure. Eg 'Misc you are the one to blame for me not having a job/ car/ future/ friends / good husband/ money/ time/ happiness/ whatever'... Blah blah repeat til fade. This was from about 6yrs onwards.

Oh lord, basically there is a lifetimes worth of therapy fodder and I could spend the rest of my life picking over the bones and looking for meaning.

I'm torn in different directions:

A. Making sense of this burden and programming I carry. And relearning everything so maybe one day I could dare have another relationship. That's my secret dream. And I feel attempting it now would be like teaching a pig to walk on two legs.
B. Concentrate on the present, and let the past stay uncharted territory beyond a few blanket titles like 'my mother was a warped and terrible person. To look for meaning in her actions is to try to find good from a tornado.

DS in my bed again tonight. Crying as he's scared I will die in the night like his grandpa, and he'll find me and be alone with my body. Told me he doesn't feel that when his grandma is here. Thats why I keep this wretched pretense of a connection with her. DS. My poor poor baby

(Howls).

misc your priorities now are 1) your own physical health and 2) the well being of your son

you have an impossible amount on your plate, but I think that if you can, you need to be terribly pragmatic and think of those two things.

Get as much medical and social help to ameliorate your own condition as possible and to slowly begin to set some distance between your son and your mother. Very bluntly she's going to be a danger to him until she dies. The older he gets, the greater a danger. Don't forget she has a very strong vested interest in hurting you every which way possible - which means isolating you from your child and poisoning the relationship.

You badly need the support and guidance of the therapist for you, yourself, but you also really need to consider how to protect mini-assortment. You're sailing on a very uncertain sea, but the MNérs can give you some moral support.

Very good advice below

Is your ds father around to provide support or another family member? To him as well as you?

I assume the last thing you want is your DM continuing the cycle with your ds as well as you, and you might have to be v brave slowly distance yourselves from her but provide a better support for him, his df, or a trusted aunt or uncle, etc, even a school teacher.

Have you told the head or his teacher the issues? No one likes change and as you can see, your dealing with it is hard as an adult. Could the school arrange counselling for him - even just to talk about his life and how he feels? You can do that too, but he might find it easier with someone else as well. I arranged it for my ds who is 8, so very specialised re that age range.

It might be helpful to think where you'd like you and your ds to be emotionally and life wise in 6 months/ 12 months - and then you can plan how to get there?

Hi Misc,

Sorry I didn't have time to read all the posts, so mostly just read yours. You are in a really difficult situation, so sorry. I have no clue how to deal with your mother, but there is a genetic condition in my family as well. So just a couple of things that worked for us, you might already be doing all this.

1. Is there a support group for your condition? It's great to see you are not alone and your son could also meet other children, there might be a leaflet explaining the condition to kids.

2. Do you have a genetic counsellor? They are trained in helping people from the mental health side not only in genetics.

3. Is there a real chance you might die in your sleep? If not how can you explain it to your son that your are safe? Maybe the genetic counsellor could do it? Or if there is a real risk can you manage it somehow? Is there a support network that is not your mum? Would your consider living in a shared house maybe with another single parent and child (sorry if it's too far-fetched)?

I wish you a wonderful next year, it can only be better as you know the facts now and knowledge is power.

Still need to go back through and thank everyone for the good advice and insight.

Realised I haven't answered a few questions:

I have a counsellor who I've been seeing since my dad died. Tis helpful and over the summer I was feeling in a much better place, not great, but all fingers on the ledge vs hanging on by finger nails iyswim.

Then I had this shock of finding out about the lie. And dealing with the health implications of that whilst trying to ignore any other implications...

Then add to that Christmas happening with the 'this time last year' awfulness. And my annoying brain deciding it had to confront the new reality of what my parents did.

The health stuff is all up in the air now. Knowing my dad had it in the way he had it changes my prognosis. Basically what they decided first time round (when I couldn't give them the right info), it may not be true anymore. When my dad died, it made the genetic picture change, and i was referred to specialists again on the back of that. Now the appointments are coming through, and I can tell them the new info it changes stuff again. And it's suddenly got very urgent which is not very reassuring tbh!

At the moment I don't know what could happen or not. No one is talking. Have had some preliminary tests end of November, and I've got a whole load more booked post Xmas, in fact I've got appointments & tests everyday next week (bleugh), and then more provisionally booked for feb if these ones don't show anything urgent.

And no one wants to see DS until after they've got to the bottom of me, as they don't want to do invasive tests on a child - which I wholehearted agree with. But leaves me in a no- mans - land now, which is clearly adding to my worries.

Misc how old was your sis when she passed away? Would she have lived longer had the Drs known what they were dealing with back then? I only hope they have better knowledge and understanding nowadays and you can retain the quality of life that you currently have with better treatment than your late sister received.

And I hope your boy doesn't have to suffer with this condition either.What's the likelihood of him having it do you think? Scary times and I really hope all goes well for you with no further bad news.

Damnit, somehow deleted a paragraph which is prob most important!

Yes, I'm on it with DS mental health. I've been seeing a child psych/ specialist person (just realised I can't remember her qualifications/ title!), anyway, I've been seeing her about DS since Easter-ish. As everyone was saying 'oh he's fine' as he's not being destructive or 'acting out' but I know him and he's not ok at all. So I've been seeing this person to learn how to help DS.

He's got worse and having problems at school (School not being helpful). Saw gp about it and there is an option for DS to be seen direct which both me & my GP thought was a good idea, but the organisation that I'm working with doesn't think it will help at his age. They say play therapy isn't a proven thing (?) and by pathologising his feelings it can make it worse.

Hum, not sure but willing to try for the time being. The basic idea is for small children, if I'm ok, he'll be ok. Though I think it's a little more complicated than that there is certainly truth in it and I'm trying very hard... everything I do I'm doing for him (to quote a bad 90s pop song!)

When my father died (1 year minus 2 days), I wanted to die too. But DS needs me and so that's that.

And as children are so very sensitive I am trying to do everything in my power to make a good life for him and be everything he needs me to be.

So the last thing I need it all this crap coming along and making everything so much worse when I'm already fighting as hard as I can :(

Well that's the question Moomin, and the answer is, I don't know.

No one can say for sure. It's taken a long time for me to even think this. But yes, probably. Horrifically.

If she'd been monitored and there had been signs then yes, there would have been surgery to prolong life. Its still a life limiting condition but yes, her life could have been longer. And quality of life much much improved.

The weeks leading up to her death, she complained of symptoms that I now know were warning signs that it was going to happen. That's something I almost wish I didn't know. Breaks my heart.

How do you look into the eyes of someone who could have stopped that?

And last year, my dad could have survived too, if the hospital had taken measures to compensate for the condition...

There is a large amount of identifying info on this thread, giving the name of the condition may get you some help and advice but I can't really see how it would make you more likely to be outed

I don't think it will add anything to name a condition, when I've said I'm not comfortable naming it.

I would rather not.

I'm not looking for medical advice or even advice living with this condition.

The name of the condition wont make the situation of my parents any more familiar.

so did your father not tell the doctors what he had, even though he obviously knew about it too?
The only reason I can think of keeping it from you initially would be to not frighten you, but in order to help him when he must have known what was wrong seems almopst to have a death wish.

I can vaguely see that they may have tried to ignore the initial signs when your sister first got them - a mix of fear and guilt as they would have known that they had made a choice to have a child knowing full well that they could pass the condition on, but it takes a special kind of EVIL denial to insinuate that it is made up and attention seeking, and to turn it all around as a drama for your mother. I assume alot of it is because she actually cant face that she is responsible, so its better to deny deny and turn the pity to herself for dealing her such a hard hand.

How you move forward I dont know - as little contact with your mother as possible I would think. Can you reconnect with other members of the family so that your DS still has others around? I would blow the whole thing right open, and tell everyone why you wont have anything to do with her - that prevents any manipulations on her part.

Now you know you can at least rest that the shit stops here, and that you and your son, should he need it (let us hope he does not) will have the best help going forwards.