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

(155 Posts)
MiscellaneousAssortment Sun 20-Dec-15 04:01:32

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...

rainbowstardrops Sun 20-Dec-15 04:18:26

Oh blimey Misc that is truly, truly awful. I have no words of wisdom I'm afraid but I couldn't just read and run.
I think you will need a trained counsellor to help you deal with this devastating news flowers

MiscellaneousAssortment Sun 20-Dec-15 04:39:44

Am already having counseling to get over becoming disabled and losing my identity and resilience. So I guess I have to dump this into the mix.

I've tried not to keep regurgitating stuff about my mother in general, as I sort of don't want to give her the airtime, but this is different I think.

I still can't believe it... But I know it's true in a way. My aunt said it as part of a general conversation and had no idea I didn't know. I'd only talked to her twice in sooo many years. Once at the funeral. Once when my mother was going in for an operation in the summer but was up to her usual tricks of telling different people different things to get what she wanted, and I decided not to play that game anymore and phoned my aunt to let her know, which ended in a 2 hr conversation which shed alot of light on things, before this massive thing. I don't think she'll want to speak to me again as she won't want to put her foot in it.

rainbowstardrops Sun 20-Dec-15 04:49:02

What an awful way to find out too? The thought that others knew but your mum has kept it from you. Why??? That is seriously, seriously messed up.
Can you get your ds screened asap?
Also, have you actually confronted your mother since you found out? I'd want A LOT of answers.

Elllicam Sun 20-Dec-15 05:18:19

Oh god how terrible have you spoken to your mum?

Imissmy0ldusername Sun 20-Dec-15 05:23:47

This sounds like HC - it's a horrible thing, and sounds like your parents were living with their heads in the sand. I'm so sorry, OP. your parents weren't open with you, mabey they thought if they ignored it, it would go away? If it is HC, there's a really good book called Tinkers Career, by Allison Leonard. It's a story, exploring the elements of finding these things out about yourself. I can't remember why I read it as a teenager, but it stood me in bloody good stead for when one of my friends discovered he had the genetics for it.

Pythonesque Sun 20-Dec-15 05:29:36

Sounds pretty awful and disturbing for you.

Denial is a scary and powerful emotion; not to justify your mother but that is often where this kind of behaviour comes from, despite it seeming impossible.

Is your son showing symptoms and/or in the process of being diagnosed, or not showing symptoms but you are aware that he has a high chance of having the condition? If the latter, you could ask to referred to genetic counselling to discuss the real risks, the options for screening, and get help with decision making around such things. It's not "counselling" in the common sense of the word, exactly, but practically focussed on understanding risks and options.

At least you now know what is going on. Can you talk to your GP about this? I suspect talking - maybe to a trained counsellor as well - may help you find a way to move on from the negative stuff and save your strength for coping with the present and the future.

Be aware that for some conditions, eg Huntington disease, where there is still no treatment (other than supportive/symptomatic, and that limited), asymptomatic people with a family history still often elect not to be screened, after careful discussion about the pros and cons. Different to denying the possibility of serious illness once symptoms arise though.

Very best wishes for finding ways to carry on.

Snowglobe1 Sun 20-Dec-15 08:39:04

It sounds to me as though your mother may have been in denial to the point of a mental illness rather than deliberately cruel. Is that a possibility?

Rivercam Sun 20-Dec-15 08:56:07

You say your parents knew of the possibility of a condition being passed down. However, we don't know what they were told, and how high the risks. Medical information wasn't widespread like it was today. The only sources of information was the gp or library, and if an unusual condition, your local library wouldn't have much info. There wasn't the self help groups you get today.

Maybe they didn't tell you about the condition to protect you, so you didn't have to worry about it.

Rivercam Sun 20-Dec-15 08:58:57

Obviously in retrospect, ignorance isn't bliss, and to be informed would have given you choices and options, and an explanation of what was going on.

All I'm saying is that life was very different in the past, and people weren't so medically aware or open.

Sorry to hear what you have been going through.


MiscellaneousAssortment Sun 20-Dec-15 12:17:43

Yes it wasn't like it is now, medical knowledge wasn't for lay folk, and certainly disability was considered shameful for some.

But to deliberately conceal vital knowledge... I just can't comprehend it. One of the central themes throughout has been that no one knew what was wrong, and damn those medics as they didn't investigate.

Throughout my sisters extremely painful, brutal life, the cry was 'oh why won't anyone help her', and the fear of never knowing what terrible thing would happen next... but it turns out my parents were responsible for this situation and could have ended it at any time - but didn't.

They could have made it all stop, the lack of medical help, the fact that my sister was in screaming agony and died without even being helped with the pain.

They deliberately made their daughter live and die in fear and agony.

My mother is a very warped, unpleasant human being. Quite possibly with untreated mental health issues, but I don't think this somehow excuses her from the damage she has done, or the cruelty she has shown. Plenty of people with mental health problems are kind, thoughtful and nice to others.

Childhood was terrible even without this health stuff. I have spent most of my adult life trying to undo the damage she did, and reaching some point of understanding and forgiveness.

But this latest revelation, blows all that out of the water. And my dad too. sad

I've been trying to write more about how shocking this lie has been but too upset.

Finallyonboard Sun 20-Dec-15 12:33:48

OP, can I ask what the genetic condition is?

This happened in my extended family too. Two sons died. It was the genetic condition and grandparents knew but hadn't shared. It transpired that grandparents had also had a son who died but didn't tell anyone.

The other side of the family buried their head, refused to get themselves/ children tested and were angry with the other side for uncovering the secret. Then their daughters son died.

They still aren't talking as far as i know. Very odd behaviour. It has ripped them apart and nobody speaks anymore.

MoominPie22 Sun 20-Dec-15 13:05:40

Miscellaneous I'm so very sorry to read all of this and hear about the abject suffering of yourself and your dear sister sad Both your parents have behaved despicably and inexcusably, in particular your mother angry

If you don't mind, what is the condition you speak of? Just curious, as a former nurse. However if that's over-stepping the boundaries please ignore me.

I did read your other post on the "Christmas" thread and I have to be blunt here but....must you really have this vile excuse for a human being ( let alone mother!) round for Xmas?! Honestly pet, she's horribly toxic and surely you should be protecting yourself and your child from such a witch of a woman? I know I wouldn't want to be touching such a person with a barge-pole. You owe her nothing and her contemptuous treatment of you and your poor sis is unforgivable.

If your head is already in a really bad place, do yourself a favour and wash your hands of this dreadful harridan and only surround yourself with people that contribute positivity and happiness to you and your son. Why maintain a relationship with her when you get sweet FA from her that is good? I feel like as long as we give these toxic individuals head-space they only carry on sapping our energy and life-force....and it's a downward spiral for our mental health that is the result.

Please take care of yourself, physically, mentally and emotionally as your son needs you more than anyone else. Don't martyr yourself for a version of your mother which doesn't exist. flowers

MiscellaneousAssortment Sun 20-Dec-15 15:42:05

Don't martyr yourself for a version of your mother which doesn't exist. flowers

Yes, so so true.

I've been guilted into it by not wanting to be as vile as her, and also my son has been through so much loss, I didn't want to be responsible for losing the last close family member.

It's hard as the general assumption is that we've got to support each other now we've only got each other. Bleugh.

Arfarfanarf Sun 20-Dec-15 15:51:03

Message withdrawn at poster's request.

MiscellaneousAssortment Sun 20-Dec-15 16:24:03

Sorry, so identifiable I think saying the condition will mean I have to delete the thread in the end, which rather defeats the purpose.

It's in a cluster of very similar conditions and there's no cure. There is a branch of the condition that has been known about for a long time, and although there's lots of new stuff known about now, the basics haven't - which is why I'm so shocked at what has happened.

No cure, but there is management of it though, and help with symptoms, there are also lifestyle things that can help if known about, and then monitoring to pick up on its progression and there are things that can be done if certain things happen as part of the condition (operations mainly, to prevent or repair the damage done), and the final usual cause of death can be held off if you're lucky, via surgery again. Oh and surgery itself will go differently if you have this condition.

So lurching from one crisis to another, with medical teams that are kept ignorant of the underlying cause, and therefore cannot do things differently as the condition requires, and so have no idea what they are dealing with or why things aren't going as expected on the operating table, or in recovery or effects post discharge.

Rushing into A&E with my sister in cardiac arrest, lungs collapsed and an organ having died and gone gangrenous inside her. When you as a parent know what was happening and didn't act until she was dying... So in the weeks lead up telling her she was making it up/ attention seeking etc. then when your daughter is coding and the docs come out to ask you if they want to carry on trying... And this happens 3 times before they get her into surgery... And then the weeks of coma... And you never mention the teeny weenie fact that they know what's happening.

How can someone do this? That's not even when she died by the way, this was just one of the terrible experiences my sister went through before it killed her. I should have done more. I knew what my parents were like. And I failed her. And I have to live with that.

How can my mother live with what she has done?

So, ignorance is not bliss. Ignorance is taking away your child's present and future. And letting them die early, after agonizing and unmanaged illness & pain. Its standing there knowing what's happening but refusing to give your child a chance of life. It's denying your child palliative care and the ability to make their own decisions. It's encouraging your children to do activities which will damage their bodies and leave them crippled in later life. It means you stand back and watch as your daughter goes through pregnancy unknowing of the risk she's taking to her own life or her babies. Knowing your daughter has no idea she's passing on the risk of her baby having this condition. It's denying her a right to genetic counseling, it's stopping her knowing she might die in pregnancy or become severely disabled as a consequence. And it's refusing to give vital information that would help consultants get a genetic history to work out exactly what's happening now, therefore what prognosis is, what the chances are and surgical & life decisions to be made.

That's what ignorance does.

My mother always said how guilty my father felt and used it as another way of hushing it up, and silencing me.

I always thought the guilt they felt was strangely excessive, but put it down to the misplaced guilt of genetic illnesses, and was very supportive and reassuring to them because of it. Now I know why the huge mass of guilt was weighing on them.

TempusEedjit Sun 20-Dec-15 16:28:45

I have no idea what to say other than so sorry you are going through this flowers

MiscellaneousAssortment Sun 20-Dec-15 16:31:41

I've just connected another thing.

I always thought one of the issues was we didn't know much about my dads dad, as he wasn't in my dads life and died young. I thought we only had what was on the death certificate. But it's not true. Just realized that last year when I was in hospital that I was told 'this was the hospital my dads dad had a heart operation in' and 'no he didn't die here, went on for a bit (years?) after that before he died'.

So they knew the condition was operable at least sometimes to extend life if not 'cute' it.

This is what it's like, picking up the pieces and wondering where my life and history and family have gone.

Twinklestein Sun 20-Dec-15 16:44:36

What an extraordinary thing to do.

It sounds as if your mother had really serious mental health issues that were never diagnosed. I wonder if she had a personality disorder/s.

It sounds like she chose to live in denial in a fantasy realm that she could just get married and have kids like everyone else. Perhaps she just blocked everything out and pretended it wasn't happening.

Perhaps once she started on the lie she couldn't face ever owning up to it out of pride, weakness and selfish brutality. The lie just got bigger, more twisted more cruel, more barbaric.

If she experienced dissociative states it may be that she wasn't fully in touch with herself or reality and the implications of what she was doing. But then perhaps I want to believe that that rather than that she was actually evil.

Puzzledandpissedoff Sun 20-Dec-15 16:47:30

Miscellaneous I'm so desperately sorry about what you're going through - maybe I can understand just a little as I too have a genetic condition which is "latent" in me but has been passed to my sadly very disabled son. While this isn't life limiting, it's unfortunate that I was never told about the other family members who suffer from it and in fact I didn't know at all until my son was born and the balloon went up

It's almost impossible to say how families can ignore these things and risk future generations - not wanting to believe it perhaps? Guilt? Maybe a generational thing around accepting "something wrong"? (The attitude when I went for genetic counselling was that "oh no, we don't have genes in our family" hmm)

I realise that counselling doesn't change the situation, but I'm so glad you're having it. Forgive me if I've misunderstood, but I'm not entirely clear whether your mother knows what you found out from the aunt? If not, are you planning to share that information with her, or do you feel it's too late for that?

Strokethefurrywall Sun 20-Dec-15 16:51:41

My god you poor thing - I can really feel your disbelieve that your mum acted so cruelly.

I could not forgive or brush under the carpet. What a disgusting excuse for a mother, mental illness or not. Watching your daughter suffer and die despite having information that provided, may have allowed the doctors to give her some respite is despicable.

I'm so sorry you're going through this thanks

MiscellaneousAssortment Sun 20-Dec-15 16:57:47

Arfarf I always thought it was a story of falling through the cracks of the NHS, a story of medical failure and parents who couldn't/ wouldn't fight for their daughter/s in sad sad circumstances.

Not a story of medical ignorance and missed chances but with 2 out of 3 people sitting behind the consultants desk having the answers but with holding them whilst watching their child/ren suffer.

So yes, there was a bit of 'was wrong with the doctors that none of thrm were able to make a diagnosis?'

And also 'Is it a very rare condition?' Yes / ish

And yes to 'did they prevent your sister from getting medical help' and me too. I remember trying to drag my sister into the bathroom to protect her / both of us, in case my mother heard her crying and screaming in pain when her knee 'went' again. But if my mother found out she'd go mental and scream for hours at us (mostly me). Never ever any medical help called. Just ranting about how terrible we were to HER and how we were ruining HER life.

And when I finally got diagnosed I revisited my childhood and realized that I had invented a way to push my collarbone back into joint by myself by the time I was 5 yrs old. Because no one else was ever going to help me, so I had to help myself. I was FIVE. My son is five. That puts it into context rather too well. Actually makes me feel sick. And like I need to hug my little boy really tight and never let him go. If I ever ever put my wonderful little child in that situation, I'd be revolted, sickened at myself, I'd contact social services myself.

NB I have shared some of that before so please don't share the condition or other details. I want to be able to come back to this thread. It's not something I'm going to be ok about this any time soon! Thank you flowers

Twinklestein Sun 20-Dec-15 17:01:29

I really agree puzzled, there's all kinds of shame around this kind of thing and a prudish horror of 'wrongness'.

My only aquaintance this issue is through a friend who wasn't told that premature ovarian failure ran in the family and ended up unable to have kids.

She was very angry that her granny, who had one child young and never got pregnant again despite years of trying, and her great aunts, who remained childless, knew and never told her.

I reckon they just hoped it wasn't passed on and it was better to keep shtum. Perhaps they felt ashamed and uncomfortable about discussing something so intimate.

The extraordinary thing is my friend's younger sister got pregnant by accident after my friend had been diagnosed. She and her mother elected not to tell her sister in case it influenced her decision about the baby. She chose to have an abortion then and whe she later tried to get pregnant she had great difficulty. She did manage ultimately to conceive after gruelling rounds of IVF.

Our friendship never really recovered from that.

Arfarfanarf Sun 20-Dec-15 17:06:05

Message withdrawn at poster's request.

IrenetheQuaint Sun 20-Dec-15 17:15:30

Jesus OP, I am so sorry. flowers for you and for your poor sister.

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