Turner Syndrome and Relationships: Twitter Chat

Written by Cassidy Hooper, TSF volunteer Twitter Chat Facilitator

Our Twitter discussion in May was about Turner Syndrome (TS) and relationships. It was so interesting and inspiring to learn about all the personal experiences with relationships as they relate to TS. We know that every experience or personal views on relationships will be different; everyone has a story to tell, and all of them matter! It is so important to raise the voices of girls and women with TS. We are unstoppable! Turner Syndrome and relationships are both big parts of our lives, and the comments below from our Twitter chat illustrate how everyone’s experiences with relationships are unique, whether they be with romantic partners, family, coworkers, etc.

Be sure to join us for our next Twitter chat on July 22nd at 8 p.m. EDT (topic TBA).

Q1: What is a relationship you are thankful for in your life (can be family, partner, friend, etc.)?

  • “I have to say I am very lucky to have a solid support system, including my husband and family, especially my mom and grandma.”
  • “I am MOST thankful for my husband. He takes good care of me, and we’re a great team! I’m thankful for my parents and family, as well.”

Q2: Do you think relationships can be more difficult for girls and women who have TS? Why?         

  •  “I would say that, having TS, it’s more about being open and honest about the expectations in the relationship.”
  • “For me, the hardest part of relationships is telling people I have TS. I am always nervous because I am unsure how they will react.”

Q3: When do you think is the right time to tell a romantic partner about TS?

  • “I talked to my husband about TS a few months into dating; he said that was good because then he didn’t feel so overwhelmed with information right away.”
  • “I think once you’re comfortable with the person and it feels natural in the conversation. Probably at least a month or two.”

Q4: Any advice on how someone might navigate the conversation about TS and infertility with a romantic partner?

  • “I would say that, although it is definitely a difficult topic, it is best to be direct, allow the other person to ask any questions they may have, and give time for them to process the information that they are being given.”
  • “Mostly be open and honest about it with them and yourself.”

Q5: How do you approach discussing TS when it comes to other relationships in your life (can be friends, coworkers, etc.)?

  • “In general, it has only been recently that I have begun to speak more openly about my TS, especially with close friends, and even my coworkers a little bit. Once I did begin to be more open, it became easier to talk about it.”
  • “I think I keep it more or less private, unless it seems relevant to the discussion/relationship. I’m pretty comfortable mentioning it if I feel it is relevant to the chat or if I’m becoming closer to the person.”

Q6: For those who face challenges navigating relationships (of all kinds), what advice would you have?

  • “The best advice I would give would be is that, as you are more comfortable with yourself, you can have more open and honest relationships with the people around you.”
  • “I would add to work to be an even better listener and to understand people more. I think that can go a long way in creating better relationships.”

Q7: What advice would you give to a woman with TS who is nervous about navigating a romantic relationship?

  •  “Always be open and honest with yourself and your partner. Always be yourself. Don’t let your partner pressure you into doing anything you don’t want to do. Talk about TS only when you are comfortable doing so.”
  • “I would say don’t rush decisions; take your time, and make sure that you are comfortable with the choices that you are making.”

When navigating both Turner Syndrome and relationships, opening up can be challenging. We girls and women with TS are strong, and having relationships is an important part of becoming comfortable in opening up about our diagnosis! These discussions build a sense of community and help us foster relationships.

Join us for our Twitter chats on the fourth Wednesday of every month (please note that we will NOT have a Twitter chat in June; we will resume on July 22nd). These discussions can lead to great conversations about important topics! #turnersyndromechat

For more information about and resources for living with TS, visit the Living tab on the Turner Syndrome Foundation website.

To learn more about or join Star Sisters, a private online group meant to connect women and girls with TS so they can share honest experiences and form a sisterhood of positivity, click here. Being a part of Star Sisters is an opportunity to raise awareness while receiving support. All meet-ups and events occur online, so anyone, anywhere can participate! 

One Comment on “Turner Syndrome and Relationships: Twitter Chat

  1. Hi I am living with TS. It’s been a very difficult journey. I would really appreciate any support available. In my 32 years I haven’t found any support but really really need it.

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