She Was Diagnosed With A Progressive Genetic Disorder And She’s Asking The Internet If It Was Wrong Of Her To Decline Genetic Counseling Since She Doesn’t Want To Have Kids

A woman in her late 20s has been struggling to deal with chronic pain and several issues throughout her whole life.
Several years ago, doctors got to the bottom of what has been going on with her, and she was ultimately diagnosed with a progressive genetic disorder.
As soon as she learned that her disorder is genetic, she began speaking to different members of her family in an effort to find out if she could pinpoint which family member this disorder came from.
Her doctor also believed this was a good thing for her to do, and her doctor also recommended that she undergo some genetic counseling.
Given the fact that she does not want to have kids of her own, she declined the counseling sessions.
It would have been several hours of counseling and she already had undergone weeks of testing for her diagnosis, so she was eager to return to her house.
After her diagnosis, she reached out to her 30-year-old brother to tell him about what was going on and pass along some information to him about the disorder.
“I mentioned that I had declined genetic counseling to learn more about how it could be passed down if I had kids because I don’t want any but mentioned it was suggested that he should get tested to see if he has it (it presents to different extremes in everyone, mine is an extreme case,” she explained.
“He has some minor symptoms that may be due to this disorder but nothing close to what I’m experiencing so we aren’t sure).”
Sign up for Chip Chick’s newsletter and get stories like this delivered to your inbox.
“My brother did not do so and is now expecting his first child with SIL. My SIL reached out to ask me questions about how it could be passed down to her child and I informed her I didn’t do the session.”
“My brother and SIL demanded I schedule the session and give them information.”
The major problem here is that her insurance will not cover this session, and she will have to completely pay for it out of her own pocket.
Another issue is that in order for her to get to the session at a specific clinic, it’s a 3-hour drive for her, and that’s just one-way.
She isn’t due back to the clinic until this upcoming fall for her yearly checkup, and it’s really out of her way to make the trip there.
Additionally, she had to have some kind of surgery for his disorder, which she is still recovering from so driving that far isn’t feasible.
She told her brother that she was not going ahead with the session, and she told him that he should go get a blood test done to determine if he has the same problem.
She also mentioned to him that if the counseling was so important to him, he could go and do it.
I refused and said my brother should start by doing the blood test to see if it’s even an issue and then he could pay for the counseling if he wants it.
Well, some of her other family members got involved and attacked her for not doing the session and accusing her of being a jerk since she should do it for the sake of her unborn nephew or niece.
She’s seriously concerned that she is a jerk and her family is right since she was able to get the session done but she chose not to, and she also knows that her brother wanted to have children.
“My brother is threatening to never let me see his kids if I don’t do the session,” she concluded.
Here’s what the internet had to say.
“It’s your brother’s unborn child; if he and his wife are so damned concerned, THEY can do the testing and counseling. If they aren’t willing to do it themselves, then they aren’t really concerned.”
“Honest to god, the entitlement of this brother and SIL demanding someone else pay and do the work.”
“…Your whole family has many loose screws if they think this is your problem. The person who is contributing DNA to the child should be the one…who tests their DNA?”
“I feel like I’m having a stroke just typing that out. The bar here gets lower and lower.”
“Hello, genetic counselor here! GC sessions include a lot of different aspects and can include how things are inherited but also includes a conversation about appropriate management that a nongenetic provider might not be as well suited to help with.”
“But one thing a counselor would emphasize to you is that your genetic testing is NOT informative for your brother and testing for him would be recommended anyways to actually confirm he has the same genetic change as you.”
“Genetics can absolutely need a case by case evaluation and I would urge your brother to find a counselor near him at NSGC.org.”
“If you’re interested, you could also find one that offers telehealth in your state so that you 1 won’t have to travel and 2 can talk about both the medical (referrals/management) applications as well as the psychosocial (dealing with family members when having a genetic diagnosis) applications.”
“Seeing a genetic counselor does NOT MEAN you have to get genetic testing, it’s a discussion where you’re encouraged to make that decision for yourself. I’m sorry this has been such a frustrating time for you and I hope this helps.”
“It isn’t your job to educate others on freakin’ genetics. Maybe I just learned the hard way being disabled how to be responsible for my own health, and as self-sufficient as I can be.”
“My health issues are MY responsibility. No one else’s, and nobody else’s health is MY responsibility.”
“It’s rough dealing with chronic health issues, we have enough on our plate. Don’t let anyone shame you for taking care of yourself.”
“You’re doing plenty by not passing on the genes yourself. And I say that as someone who also doesn’t have kids for medical reasons.”
You can read the rest of what the internet had to say here.
More About:Uncategorized