'AITA for calling my parents selfish for having me, knowing they’d pass down an illness?' UPDATED 2X

"AITA for calling my parents selfish for having me, knowing they’d pass down a hereditary illness, and going LC after they hid it, putting my child at risk too?"

I (28F) recently found out I have a serious hereditary illness that’s going to screw up my life, and I am so mad I can barely type this out. It’s a degenerative illness, no cure, nothing. My body’s just gonna slowly get worse.

And the kicker? My parents have known this could happen my whole life and never said a word. This illness runs in my family. My dad’s mom had it. His sister—my aunt—died from it a few years ago.

I was living overseas when she passed, and my parents told me it was cancer. Cancer. They lied right to my face. It wasn’t until I got diagnosed that they finally came clean and admitted she had the same illness I do. When I confronted them, my dad wouldn’t 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 didn’t want me “living in fear.” Are you kidding me? I could have been prepared! Instead, they chose to let me walk into this blind. And here’s where it gets worse—I have a 2-year-old son. My child might have this, and they never told me I was at risk. I could’ve had him tested, made informed decisions, anything.

But no, they took that from me, and now I live in constant fear for him too. Then my mom had the nerve to ask me if I would have rather not been born than deal with this. Can you believe that? She turned it around on me, like I’m the monster for even thinking it. And you know what? Yes, I said it. Yes, I would rather not have been born than deal with this disease.

They made a selfish choice, and now I’m paying for it. They knew the risks and did it anyway, for themselves. They wanted kids, and now I’m stuck with this. I called them selfish, and I meant every word. Now, they’re begging me not to tell my younger siblings. They don’t know about this yet, haven’t been tested, and my parents want to keep it that way.

They’re hoping they’ll get lucky, but I’m not going to lie to them. I refuse to let them be blindsided like I was. They deserve to know the truth. I’ve gone low contact with my parents. I can’t stand to even think about them right now. My mom keeps trying to guilt-trip me, saying they were “just trying to protect me.” Protect me from what? The truth? No, they weren’t protecting me.

They were protecting themselves, from the guilt of knowing they passed this on, and now they want me to protect them too. But I won’t. 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 “protect” me?

The commenters had a lot to say in response.

Fatherofthree47 wrote:

Sounds like our family and Huntingtons disease. We’re praying that the last children that have it don’t have any kids. It has decimated a chunk of my mom’s side of the family.

GobboChomps wrote:

NTA. My parents did the same to me knowing and I'm terminally ill at 24 years old from not being able to or even having the knowledge to try to offset the effects of my conditions.

It was selfish at all to breed, at least in my case, and not only that but my parents kept me and everyone else in the dark about it. It wasn't even that I wasn't seeking care/answers. Ive been very unwell and wonky all my life and started seeing doctors for it regularly by 7.

By middle school I was very aware something was very wrong and doctors didn't know either so would bandaid slap it all. I needed surgeries and treatments I never got bc everyone denied there was a bigger issue. My parents knew. EDS type 4, the vascular, and Charcot Marie Tooth disease. My dad told me about the CMT disease maybe 7 or 8 months ago.

The EDS type 4 was only found bc they couldn't figure out why my organ failure was so rapid. And both parents knew. You are 100% NTA and your parents are selfish af OP. Im sorry. I also wouldv'e rather never been born. I've been either hindered or in outright pain probably 97% of my life after 6 years old and told to suck it up by doctors while my parents implied I was a big faker knowing I was a genetic wonk.

psycocavr wrote:

My X wife's family (moms side) has Huntington's (Dominant gene genetic disorder so 50/50 if a parent has it that the child gets it). It was the big family secret. None of the 4 kids knew about it. her Grandfather died of it. But this was passed off as he was a drunk and had an accident). My X always had questions and when her mom started with early signs (~ age 40) she began to do research.

Finally she was able to get the story in bits and bits. The siblings all sort of denied it and the Grandma never admitted it. My X was tested and did not have it (that was a lot of work on our part to keep it of insurance records). She told all of her siblings...two of which already had kids.

None of them ever were tested, they just decided to let nature take its course. (2 of the 5 have Huntington's and one has died of it). She tried to tell her moms other siblings but they were resistant to hearing it. The old ' family Secrets'..not your business. X's mom died of the disease after we were divorced, 2 of her siblings died of it. Unknown how many of the kids may have it.

The next day, OP shared an update.

Edit: most of you figured it out anyway. It is Huntingtons.

Update: I ended up telling my siblings. We met at my sister’s house, and I just came out with it:

“I have Huntingtons. It’s hereditary. You should both get checked.” My brother started panicking he and his fiancée just started trying to get pregnant, and now he’s terrified. He’s furious with our parents and fully on my side. He confronted them right after, and now we’re both going low contact.

My sister was more shocked and distant, but she said she’ll get tested. My parents are pissed that I told them without waiting for “the right time,” but I don’t regret it. My siblings deserved the truth, and I wasn’t going to let them live in ignorance like I did.

Four days later, OP shared a more in-depth update.

I told my siblings

We met at my sister’s 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 fiancée had just started trying for a baby, and the fear in his eyes was immediate. His fiancée, who works as a senior nurse in palliative care, didn’t 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 she’s been pulling strings to get my brother’s test done as fast as possible.

She’s also been making sure I get the care I need, reaching out to specialists she knows personally. She’s actually moving things around and calling in favors to ensure I’m seen quickly. On top of that, she’s 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 I’m grateful she’s making it happen, because I wouldn’t know where to begin. My husband and I have also been having difficult conversations about the future. We’ve decided to make my will, and I’ve been clear with him about when I won’t want to continue living if things get too bad. I’ve 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. We’re planning to speak to a child psychologist soon to figure out the best way to prepare our son for what’s coming, though we haven’t 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 didn’t stay long. As soon as my parents started explaining how they kept the illness hidden to “protect us,” she couldn’t take it.

She stood up, said she couldn’t handle it, and left. She’s been distant since, and it feels like I’ve lost her a little. I know she’s terrified, but it still hurts to see her pulling away. After my sister left, everything exploded. My parents turned on me, blaming me for “ruining the family” and accusing me of causing all this chaos by telling the truth.

They kept saying they did it to protect us, but I just couldn’t respond anymore. That’s when my brother’s fiancée 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 hadn’t protected us, they had betrayed us, and I was so relieved she stepped in because I didn’t 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 couldn’t even react, I was so shocked. My husband immediately stepped between us, grabbed my dad’s arm, and told him he’d 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 fiancée walked out with us, and since then, none of us have spoken to my parents. They’ve been calling, but I don’t want to hear their excuses. They’re still insisting they did everything to protect us, but it feels like they were just protecting themselves from guilt. I don’t have the energy for their manipulations anymore.

Right now, my brother and I are focused on getting tested. His fiancée is doing everything she can to keep things moving forward. She’s been an incredible support, and we’re relying on her to help us navigate what’s next. I’m focusing on my son, my husband, and preparing for the future. There’s too much at stake to keep fighting about a secret that never should have been kept in the first place.

The commenters were glad to hear an update.

m33kor wrote:

I just saw your original post, I am so sorry that your parents decided to hide this from you. I have a genetic condition that causes me to be quite disabled and am currently struggling with the reality I would never be able to live with myself if I passed it on.

My Mother spins the same excuses and turning it back onto me by asking if I’d prefer not to be born. For them to hide it and be so mad breaks my heart for you.

Not only are you dealing with this new reality and diagnosis but they are choosing to break down your support system and blame you!? It’s awful and I’m so sorry you and your family are dealing with this. I’m so glad for your SIL for taking charge, at least someone is making this easier for you and your family.

tingiling wrote:

"She’s been distant since, and it feels like I’ve lost her a little. I know she’s terrified, but it still hurts to see her pulling away."

You haven't lost her, but yes there might be a new distance between you know. My sister had Huntingtons, but since we are technically half-siblings I was never at risk. The idea of the illness always weight heavy on her and sometimes she would say things that revealed how deeply it frightened her.

She didn't fully share those darker thoughts with me, and even if she didn't I'm not sure I would have been able to fully understand what she was going through. But later on she talked about how much it meant to her that I often would come over and watch rom-com movies with her when she was down, regularly go on outings with her and generally stay in touch.

Things I never really associated with her worries about her illness at all. But it help her from being overwhelmed by it all apparently. If your sister is so frightened that she can't even talk about it, then you may not be able to support each other in this.

But even if you never talk about it, by still being sisters to each other, it might give you comfort. And then you won't really have lost her. Even if there is a horrible, obvious elephant in the room, just doing things together might be a real comfort to you both. I wish you and your family the best.

Dachshundmom5 wrote:

My son was in the NICU when he was born. There was a baby there that kept having strokes and seizures. It was almost constant the NICU MD's and a nurse hovering over him, trying to keep him alive or begging the parents to let him go. My Mom and Dad were sitting with the family in the waiting room at one point when one of the baby's grandmother's said this was their 4th grandchild with this illness.

They had all passed. The couple had something like a 80 or 90% chance of all their babies having this condition, but refused to quit having babies. The grandmother said that they also refused to listen when the doctors would recommend ceasing life support. None of the babies lived to 6 months. I wonder how many babies they had that went through all that.

It will never make sense to me the selfishness of some people. How can you knowingly have a major hereditary disease and have kids knowing the chance you're quite possibly condemning them to horrible deaths? My son was sick due to a fluke of nature. I don't know if I could live with it if I found out I passed him some hereditary disease that k--led him.