Disclosing to young adult a genetic condition they don't know they have

[Anonymous]

I will attempt to make a long story short. I am looking for advice on how best to support my mom, who is looking to "right a wrong."

My sister, now a young adult, has a genetic disorder that she does not know she has. With this disorder comes a range of "issues," one of which is learning disabilities and my sister did/does know that she has these learning issues when she was growing up in school. My sister does not know of the overarching issue, however, which causes the learning disabilities, in addition to other issues it causes, both emotional and medical.

My parents decided when she was a baby (with some backing of her doctors) not to tell my sister of this condition as it would be too confusing for her to understand. My sister is very emotionally immature due to her condition and frankly I still don't feel she is ready to take in this information all at once now, although I would have told her from the start--but it wasn't my place to intervene.

So my mom now wants to share this information with my sister but is worried about how best to present it to her. Considering my sister's emotional difficulties, I think it is best to "downplay" the fact that my mother intentionally hid this information from her for all of these years. I think my sister will be, understandably, very upset that the rest of the family knew about this information and yet she didn't.

Thoughts and advice? Thanks in advance.

[Anonymous]

Your mother should see a therapist to discuss the best way to do this. She needs professional advice, and she should receive it form someone who will first listen and learn about your sister and the family dynamic. I have done this in a completely different context where I needed to have a difficult conversation with a family member. My therapist advised me to approach it very differently than I had planned to and he turned out to be right. Discussing this with a therapist will also help relieve the emotional burden your mother is carrying around.

[Anonymous]

I agree with PP. You need professional help with this.

Also, I was listening to the interview of this book, Far from the Tree:

http://www.wnyc.org/npr_articles/2012/nov/08/what-happens-when-kids-fall-far-from-the-tree/

You are not alone in this.

[Anonymous]

Maybe meet with a genetic counselor? Their entire training is geared to discussing complex genetic issues. They get lots of training in more traditional counseling (psychosocial stuff) too. Children's has some great genetic counselors...

[Anonymous]

A genetic counselor is also a good idea.

Hopefully, your sibling will understand that people didn't always get the best information way back when on how to handle situations. People often used to hide that their child was adopted only for it to inadvertently come out later for example.

[Anonymous]

Georgetown also has genetic counselors.