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To think he's lying? *trigger warning*

190 replies

helpagirloutplease · 13/10/2019 07:48

Long time poster that has namechanged.

I don't know where else to ask. I have a 4 year old to a man I haven't seen for years. He had a mental health breakdown during pregnancy and did some terrible things (held me at knifepoint, tried to drive me into a wall, strangled me, tried to hang himself infront of me ect) and beat me up.

He was a working professional, and was arrested for assault and charged, then sent to prison. He breached the restraining order numerous times resulting in him going back to prison a few times and had my name tattooed on his chest even after all this.

I attended social services meetings and a meeting with psychiatrists at the time so I know that he was diagnosed with multiple personality disorder and bpd. I haven't been in contact with him since the first time the police took him away (they took him several times after from outside of my house when he breached restraining orders but I didn't open the door). There is a no contact order in place for my daughter which I think is largely because he had no interest in engaging with nhs mental health teams.

I received these messages at midnight last night. I think he's lying, why would he do this to me?

OP posts:
Beveren · 18/10/2019 07:38

How did you get on with the GP, OP?

helpagirloutplease · 19/10/2019 15:29

@Beveren we have been referred to genetics. I'm not sure how long that will take. But I have called 4 different genetics departments and spoken to Huntington's uk and been told by them all that they won't test until she's 18 which just breaks my heart.

OP posts:
IdiotInDisguise · 19/10/2019 16:47

Bloody bastard, if he cared an inch for his kid he would have waited until she was 18 to let you know.

He is really sick, bloody psychopath you have to deal with. The only thing that I can say OP is that when you have to deal with a life threatening condition sometimes it helps to remember that life is not assured to anyone of us, try to put this to the side (I know it is difficult) and worry when you get a diagnose.

You don’t want to think you ruined your life, worrying about this, the day you get the results of a test telling you she does NOT have the disease.

NearlyGranny · 19/10/2019 16:56

Whether it's true or not, you don't need to contact him!

contrary13 · 19/10/2019 21:45

It can take a while for the ball to get rolling with genetic counselling - unfortunately, I speak from experience. It took a year for my appointment to come through, and then 2 days in a London hospital being tested. But I was an adult - my son, who is displaying symptoms of the disease I have, is 14... and even though he's symptomatic, they still won't test until he's legally of age to consent, himself. It is, what it is, I'm afraid. Hopefully, because this is a juvenile, they might move a bit quicker. I truly hope so. But when she's 18, your daughter may decide not to be tested. That's her perogative - whether to know, or not. And if she does decide not to, you have to be prepared for that, too.

Your daughter has a very good chance of not having Huntington's, though, OP. And as Idiot says, you don't want to look back and regret having spent her entire childhood worrying about something that may never happen. I completely understand how anxious this has made you feel - and why. But that's what your ex wants you to feel. He wants you to waste your daughter's childhood with "be careful"'s and "what if she's got it...?!" anxiousness. Don't give him the satisfaction, OP, because he's not worth it. He's sick in more ways than just Huntington's - and selfishly nasty to boot.

Talk to a counsellor, get it out of your mind where it can no longer fester, make plans for the future, enjoy your daughter growing up - and don't give her sorry excuse for a father a second thought.

Flowers
meuh · 21/10/2019 21:46

There are very good reasons why they don't test minors, and why individuals must make the choice of whether to know or not for themselves. I do understand though why you just want to know. Flowers

helpagirloutplease · 13/01/2020 00:12

Bit of an update. I had a few more emails after the first few messages. The letter he had sent me had the bottom clipped off but you could see enough to see that it read "it is important to remember that you don't have symptoms at the moment".
So I know he definitely has the gene but not the disease at the moment. He called my dad at work at 7am one day telling him he was going into a hospice and would die soon and that my daughter may die, my dad was in shock as I hadn't told him about any of it. My mum turned up at my house thinking she was about to tear my world up.
In the last few weeks I've secured a non molestation order and he has stopped paying maintenance and said he doesn't want any contact with her in the future.

Tomorrow I have to go for the genetics counselling appointment and I'm really anxious about it. I had a drink at 11am this morning and have had about 6 since (I usually only drink once or twice a year and only one or two), I've bitten all of my nails off and they are usually kept lovely too. I'm not an anxious person generally but facing up to all this is really getting to me. I'm usually very strong and I keep telling myself to channel my inner Theresa May (strong and stable) but I feel so worried. If anybody is up, please come and say hello. I have no idea what I'm supposed to do.

OP posts:
Dinosaurrawr · 13/01/2020 00:33

I have no constructive advice for you OP but I’m here for a wee hand hold 💐

LR33 · 13/01/2020 00:37

Hi op,
Sorry you are going though this.
I had the genetic testing for Huntingdons done when I was 18, after my mum tested positive for the gene.
I had alot of counselling before and after the results.
You are not alone, and its good that You have a no contact order in place so he cant manipulate you with rubbish about him dying or going into a hospice.
I know you are anxious and finding it tough but your daughter wont be tested until she is 18 and even then she may decide she doesnt want the test. Which is also fine. You need to stop worrying and enjoy your lovely girl xx

ExhaustedFlamingo · 13/01/2020 00:57

Hey OP, I would be in a similar position to your daughter - my dad had Huntington's and died a few years back now. He was diagnosed in his 60s and actually went on to die of lung cancer, not the disease we'd all been obsessing about for years. I know it's hard but it just shows the futility of worrying about it.

I've been to genetic counselling - I went when I was pregnant with twins. I was eaten up by the fear of passing the gene on to them. I realised I didn't want to terminate just on the possibility that I MIGHT pass the gene on, particularly when so much progress has been made. We don't have a cure for it yet but last year there was a massive jump in gene research which scientists believe may hold the key. For the first time since I got the news, I felt positive that if my children ARE affected by the gene, there may be hope for them.

My dad led a full, active and rich life and only got diagnosed incidentally when he had a stroke (he was a heavy smoker) in his mid-60s. Although in the following years the disease developed, his life wasn't cut short as others are by HD.

I was told that due to the pattern of inheritance, I couldn't pass on the juvenile form to my unborn children. To me, that was the most important factor. If they do get it, the chances are we're talking in four or five decades time - I feel genuinely optimistic that we'll know enough to manage/treat the disease by then.

I've not been tested. I'm normally the person that likes to face things head on, but really I felt there was no point. It's very easy to become obsessed with this disease and to second guess every thing that happens. I may well have Huntington's, hopefully not, but maybe I do. At the moment there's no obvious signs and that's what I choose to focus on. I'm 44. I know how hard it is, believe me I really do. I've been on a hugely emotional journey to get to this point of acceptance. I'd really try and urge you to think about the full range of possibilities rather than just the worst case - your daughter may be positive, but there may be a cure (I'll find you a link to the research and post it separately). Your daughter may be totally unaffected and test negative for the gene. Your daughter may not show symptoms until very late in life. Don't waste your time panicking about something that might never happen. And I hope that doesn't sound patronising or flippant - it's taken me a long time to get to this point.

Also, and I hate to go back over old ground - but why was he tested? You aren't aware of either of his parents showing any signs and according to the NHS letter he is asymptomatic. When he was diagnosed with BPD no-one raised Huntington's then. Why on earth has he suddenly been tested? It's not a simple test and they don't just let you have it because you fancy it. It just sounds.....odd. If his psychiatric symptoms were due to the Huntington's, it's unlikely that he'd be fine now. They're not isolated psychotic episodes - Huntington's is progressive. I used to work with the research council in Wales for Huntington's and also used to be part of the local HDA so I've got a fair bit of experience.

As for tomorrow, there's going to be no sudden revelations. It's just a chance for you to ask questions and get information so think about what you need to know in advance. Be as honest as you want, they understand how shocking this kind of diagnosis is and the impact it has on the wider family. They won't judge you.

Do let us know how you got on? If I can help with anything at all, please feel free to inbox me. Sending hugs.

ExhaustedFlamingo · 13/01/2020 01:06

This is the link I mentioned - research is still ongoing I believe but all the signs are incredibly positive. Obviously there's very sensitive details about Huntington's included in this link so if anyone can't face reading about the effects, I'd give it a miss.

www.bbc.co.uk/news/health-42308341

ThumbWitchesAbroad · 13/01/2020 02:05

I can think of one reason why he's suddenly been tested - if his new wife wants to have children and knows about the HD, she might have made him get tested to see if there was a risk of it being passed on to any offspring.

So there's a potentially legitimate reason for him being tested and a potentially legitimate reason for him letting you know.

However, the rest of it, especially the hospice shit, is just another manifestation of his determination to control and abuse you further - so it's just as well that you have got the non-molestation order against him again.

I'm so sorry that you're being subjected to all of this and I hope that your DD is free of the gene, even though you may not find that out for several years yet.

Hopefully tomorrow will answer more questions for you.

EKGEMS · 13/01/2020 14:40

I was informed two years ago via genetic testing that I had two mutated genes out of five associated with an organ and I passed one onto my child. The guilt and terror I still feel is difficult to describe. We are simply watching and waiting in case he ever had the symptoms I've had. Sadly it could be fatal or a chronic life long issue. I wish you the best OP and your daughter

helpagirloutplease · 14/01/2020 11:33

Thanks guys. It was a very upsetting reality.
It was good to get some support. I'm so scared for my daughter

OP posts:
TexasTina · 04/02/2020 15:49

How was the genetics counselling?

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