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The original was posted on /r/bestofredditorupdates by /u/LucyAriaRose on 2024-10-28 04:00:38+00:00.
I am NOT the Original Poster. That is u/Quirky_Background838. She posted in r/AITAH.
Do NOT comment on Original Posts. Latest update is 7 days old per the rules of this sub. This has not been posted here before. PLEASE read trigger warnings and mood spoiler- this is a heavy one.
Trigger Warning: Huntingtonās Disease; imminent death;
Mood Spoiler: genuinely fucking sad
Original Post: October 17, 2024
I (28F) recently found out I have a serious hereditary illness thatās going to screw up my life, and I amĀ soĀ mad I can barely type this out. Itās a degenerative illness, no cure, nothing. My bodyās just gonna slowly get worse. And the kicker? My parents have known this could happen myĀ wholeĀ life and never said a damn word.
This illness runs in my family. My dadāsĀ momĀ had it. HisĀ sisterāmy auntādied from it a few years ago. I was living overseas when she passed, and my parents told me it was cancer.Ā Cancer.Ā They lied right to my face. It wasnāt until I got diagnosed that theyĀ finallyĀ came clean and admitted she had the same illness I do. When I confronted them, my dad wouldnāt even give me a straight answer. I asked if he had it too, and he dodged every single question, acting like I was overreacting.
My mom, on the other hand, tried to justify it by saying they didnāt want me āliving in fear.ā Are you kidding me? I could have beenĀ prepared! Instead, they chose to let me walk into this blind. And hereās where it gets worseāI have a 2-year-old son. My child might have this, and theyĀ neverĀ told me I was at risk. I couldāve had him tested, made informed decisions,Ā anything. But no, they took that from me, and now I live in constant fear for him too.
Then my mom had theĀ nerveĀ to askĀ meĀ if I would have rather not been born than deal with this. Can you believe that? She turned it around on me, likeĀ IāmĀ the monster for even thinking it. And you know what? Yes, I said it.Ā Yes, I would rather not have been bornĀ than deal with this disease. They made a selfish choice, and nowĀ IāmĀ paying for it. They knew the risks and did it anyway, forĀ themselves. They wanted kids, and now Iām stuck with this. I called them selfish, and I meant every word.
Now, theyāreĀ beggingĀ me not to tell my younger siblings. They donāt know about this yet, havenāt been tested, and my parents want to keep it that way. Theyāre hoping theyāll get lucky, but Iām not going to lie to them. I refuse to let them be blindsided like I was. They deserve to know the truth.
Iāve gone low contact with my parents. I canāt stand to even think about them right now. My mom keeps trying to guilt-trip me, saying they were ājust trying to protect me.ā Protect me fromĀ what? The truth? No, they werenāt protecting me. They were protectingĀ themselves, from the guilt of knowing they passed this on, and now they want me to protect them too. But I wonāt. I love my son and my siblings too much to lie to them.
AITA for going LC and refusing to keep their secret, even though they claim they were just trying to āprotectā me?
Some of OOPās Comments:
To a removed comment:
They saw me going through pregnancy, I told them before the 12 week mark. They said nothingā¦NOTHING!
OOP clarifies:
I would have not had kids if i knew.
OOPās husband:
My husband obviously knows
Commenter (downvoted): Respectfully, I think you may be lashing out at your parents a bit more than normal because youāre angry about the disease. Itās called transference.
Itās logical to be angry at being deceived. I just think there may be a bit more to your anger - mixing angry at the news and the grieving for yourself and your son as well.
I highly recommend therapy to process all of this.
OOP: No. They made me knowing I had 50 percent chance to die painfully AND DIDNT FUCKING TELL ME WHEN I WAS PREGNANT DOOMING MY FUCKING CHILD TO THE SAME FATE. Disrespectfully, I think you may be talking out of your ass.
Update (same post): October 18, 2024 (Next Day)
Edit: most of you figured it out anyway. It is Huntingtons.
Update: I ended up telling my siblings. We met at my sisterās house, and I just came out with it: āI have Huntingtons. Itās hereditary. You should both get checked.ā My brother started panicking he and his fiancĆ©e just started trying to get pregnant, and now heās terrified. Heās furious with our parents and fully on my side. He confronted them right after, and now weāre both going low contact. My sister was more shocked and distant, but she said sheāll get tested.
My parents are pissed that I told them without waiting for āthe right time,ā but I donāt regret it. My siblings deserved the truth, and I wasnāt going to let them live in ignorance like I did.
OOP comments on the Huntingtonās subreddit where her post was crossposted:
Commenter: I noticed this as well. The original OOP said she is already ādiagnosedā with HD at age 28, but nothing about her dad even showing symptoms. And her grandmother and aunt both died of it, but she never knew they had it or noticed symptoms in them as they declined? That seems unusual.
OOP: Hi I am the OP. He is. They are just saying that itās because of old injuries and other unrelated things. I know he has it because I have it. But he wonāt admit it
Update Post: October 21, 2024 (4 days from OG post)
I told my siblings
We met at my sisterās house, and I just came out with it. I told them what i had and said that it was heredetary.
My sister thanked me for telling her. Told me she would get tested but seemed distant. I get i, it is very heavy. So I have been giving her space but made it clear that I am there for her.
My brother looked horrified. He and his fiancĆ©e had just started trying for a baby, and the fear in his eyes was immediate. His fiancĆ©e, who works as a senior nurse in palliative care, didnāt take it lightly either. She deals with degenerative diseases every day and had a family member die from one, so this news hit her hard.
She immediately took control of the situation. She has a lot of connections in the medical field because of her work, and sheās been pulling strings to get my brotherās test done as fast as possible. Sheās also been making sure I get the care I need, reaching out to specialists she knows personally. Sheās actually moving things around and calling in favors to ensure Iām seen quickly.
On top of that, sheās been adamant that I need to see a counselor, pushing me to get emotional support. Given her experience, she knows how hard this is going to be, and Iām grateful sheās making it happen, because I wouldnāt know where to begin.
My husband and I have also been having difficult conversations about the future. Weāve decided to make my will, and Iāve been clear with him about when I wonāt want to continue living if things get too bad. Iāve also started recording videos for my son. I watched P.S. I Love You years ago, and the idea of leaving something behind for my husband and son feels like a way to hold on to a part of me.
Weāre planning to speak to a child psychologist soon to figure out the best way to prepare our son for whatās coming, though we havenāt started yet. And also to weigh our option about him and the possibility of him getting this illness from me. We are not going to make an uniformed decission.
On Saturday,our parents invited all of us over to their house, saying they wanted to talk. My sister came too, but she didnāt stay long. As soon as my parents started explaining how they kept the illness hidden to āprotect us,ā she couldnāt take it. She stood up, said she couldnāt handle it, and left. Sheās been distant since, and it feels like Iāve lost her a little. I know sheās terrified, but it still hurts to see her pulling away.
After my sister left, everything exploded. My parents turned on me, blaming me for āruining the familyā and accusing me of causing all this chaos by telling the truth. They kept saying they did it to protect us, but I just couldnāt respond anymore. Thatās when my brotherās fiancĆ©e stepped in. She completely laid into them, telling them that they had no right to keep something this serious from us. She told them they hadnāt protected us, they had betrayed us, and I was so relieved she stepped in because I didnāt have the energy to argue anymore.
Then my dad snapped. He started shouting at her, telling her to stay out of it, and he shoved me. I couldnāt even react, I was so shocked. My husband immediately stepped between us, grabbed my dadās arm, and told him heād better never touch me again. My dad just kept shouting, saying I was the one who was tearing the family apart and blowing everything out of proportion.
That was it. We left. My brother and his fiancĆ©e walked out with us, and since then, none of us have spoken to my parents. Theyāve been calling, but I donāt want to hear their excuses. ā¦
Content cut off. Read original on https://old.reddit.com/r/BestofRedditorUpdates/comments/1gdtgbx/aita_for_calling_my_parents_selfish_for_having_me/
Atrocious behaviour from the parents. They shouldnāt have had kids at all imo but bare minimum is to get tested first and ensure your children know about it.
And THREE kids?? From the way OOP wrote about it, it sounds like dad knew his mother had it before having kids himself. That means if he had confirmed the gene in himself, 87.5% chance that at least one of those kids has it. I guess generously if he never tested himself, that means only 43.75% chance of at least one kid having it, but thatās still pretty high for such a shit disease to subject your kids to.
Looks like you can test in advance nowadays.
Prenatal Diagnosis is the process of testing a baby while in the pregnant uterus to determine if the baby has inherited Huntingtonās disease (HD) or not. This can be done two different ways: CVS (Chorionic Villus Sampling) is done typically between 10-13 weeks of pregnancy.
That was it. We left. My brother and his fiancĆ©e walked out with us, and since then, none of us have spoken to my parents. Theyāve been calling, but I donāt want to hear their excuses. Theyāre still insisting they did everything to protect us, but it feels like they were just protecting themselves from guilt. I donāt have the energy for their manipulations anymore.
Right now, my brother and I are focused on getting tested. His fiancĆ©e is doing everything she can to keep things moving forward. Sheās been an incredible support, and weāre relying on her to help us navigate whatās next. Iām focusing on my son, my husband, and preparing for the future. Thereās too much at stake to keep fighting about a secret that never should have been kept in the first place
Some of OOPās Comments:
Commenter: āRight now, my brother and I are focused on getting tested.ā I donāt understand, I thought you were already tested and have huntingtonās?
Has your child been tested yet. Iām so so sorry for what you and your family (minus rotten selfish parents)
OOP: My brother is getting tested, and I am going to see what my treatment options are and test for those.
Commenter: OP, please SOMEBODY CHECK ON THE SISTER. Make sure you stay close to her just in case she does something drastic. She might seem closed off but maybe she has the symptoms and scared to get tested and what you said might be the explanation for her.
OOP: My sister has a long-term partner who is amazing. She is not alone, and her partner and I have talked. Thatās why I am giving her her space.
Commenter: Your parents are not very smart.
Itās convenient that your brotherās fiancĆ©e deals with degenerative diseases.
OOP: Not mainly. But she sees a lot of them. Even though I think most of her patients are dying of cancer
Commenter: I would be curious, did your parents literally lie on your medical history forms your whole life to say no diseases run in the family?
OOP: I honestly donāt know if my father got officially tested. He knows what his mother and sister died from. I have tried getting information out of them like crazy. Every single bit I have was hardly pulled out. Any extra info they have categorically refused to give me/us. As far as I know you can also test anonymously even though I am not sure how that works
Commenter: Iām so sorry youāre going through all this, your parents are not good and are full of it. As for blaming you for doing what they should have done in the first place, thatās wrong, and you do right to go NC, whether itās temporary or permanent.
Your brotherās fiancee, however is a star!
OOP: She is a strong woman with so much love in her heart.
Commenter: Iām so sorry for everything youāre going through <3 What prompted you initially to get tested for Huntingtonās?
OOP: Unexplainable symptoms. I got hot potatoed from specialist to specialist till jne of them heavily suggested to test for that.
To a heavily downvoted comment: [editorās note- only including this because OOPās reply spells everything out clearly]
OOP: Sit down and use your big brain. My grandma: died of Huntingtons My aunt: died of Huntingtons They were aware of that BEFORE I was born as a PLANED non oopsie baby. Theh had me knowing there was a 50 percent chance of me getting sick and painfully dying of Huntingtons. Okay? Alright. I was born. They decided to have 2 more kids. We grew up. All beyond 18 at this point. Quiet. Our aunt diedā¦ what was saidā¦ cancer. Tragic but that shut happens. I get married. Nothing. I GET FUCKING PEEGNANTā¦nothing. Now they didnāt only condem THEIR kids to this shit but also MY BABY. Sit down.
Commenter: I would check your medical history, them not disclosing that, depending how far you want to go with thisā¦ could be grounds for taking legal action against your parents. Because you should have been told of this at 18 when you went to a primary care doctor. Them NOT telling you could also be grounds for legal action. I apologize I am not saying your story is āoffā its more that this should have been dealt with
OOP: I actually requested my medical file from my insurance, and I am going to see it. I actually didnāt know this was possible until a couple of days ago.
Commenter: In addition to the videos youāre making for your kiddo, you might also consider making some āwatch whenā¦ā or āopen whenā¦ā milestone videos or letters. That way he gets to continue hearing from and/or seeing you with new significant pieces of his life, in addition to what he sees and learns about you as he grows.
OOP: Yes I plan on doing those. For big live events and maybe for moments where he is sad or ill or misses me. I really hope I make it long enough for him go properly remember me
Finally- the symptoms and progression of Huntingtonās:
OOP:
Clumsiness and tripping. Mild mood swings and irritability. Forgetting simple tasks or objects. Uncontrolled jerky movements. Slurred or slowed speech. Difficulty swallowing and choking. Severe depression or aggressive mood swings. Memory loss and confusion. Loss of independence, needing help for daily tasks. Full-time care due to physical and cognitive decline. Inability to walk, talk, or swallow. Death due to complications, often pneumonia or heart failure.
