Are you struggling with talking to your family about infertility caused by Turner Syndrome (TS)? Are you a woman with TS who’s finding it difficult to talk to your partner or strangers about it? This article will discuss everything you need to know about talking about infertility, from what it is to how to talk to strangers as well as your partner about it.
Note: Everyone’s experience with infertility is different, so not all the advice stated below will work for everyone. This information is meant to be educational. It should not take the place of individualized medical advice.
According to the Centers of Disease Control and Intervention (CDC), infertility is when you are “not being able to get pregnant (conceive) after one year (or longer) of unprotected sex”.
There are two types of infertility:
- Primary infertility: when you cannot have children because of a miscarriage or stillbirth; and
- Secondary infertility: when you already had a child but were then unable to birth another one
- Men are part of or the cause of 40% of infertile couple cases.
- Additionally, 10% of women have infertility. This includes women who have Endometriosis or Polycystic Ovarian Syndrome (PCOS). Endometriosis causes the endometrial tissue to grow on the uterus’s exterior instead of its interior. PCOS causes women to have irregular periods or an irregular number of male hormones.
- Having genetic conditions such as Down Syndrome, Kallman Syndrome, or Turner Syndrome can increase the risk of infertility.
- TS often causes infertility, making it harder for women who have TS to have biological children. Women with TS have a 1-3% success rate for spontaneous pregnancy.
Talking About Infertility
Having and treating infertility can be a very emotional and straining experience. This is a point often overlooked. Why should you discuss it with your loved ones?
- Individuals with infertility often experience stress and anxiety, especially when they attempt to “fix” their condition.
- People who lose a child due to infertility may grieve intensely, which can affect their overall mental health.
- Couples often suffer from anxiety and depression because of their infertility.
- Many people are afraid to talk about infertility as well as how it affects their mental health.
- These conversations often do two things: They either blame people with infertility for causing their own problems, or they focus on the “fun” side of trying for a baby.
- BIPOC (Black, Indigenous, People Of Color) women especially deal with infertility issues and their stigma.
How do I talk about infertility with people I'm not comfortable sharing it with?
This is a stressful, common problem at both social and family gatherings. However, luckily, there are many ways to deal with it.
- Be ambiguous. Say something along the likes of “I’m not sure when/if we’ll have kids” or “It’s complicated” before moving to another topic.
- Be polite. For example, you can say, “We’re discussing that privately.” After that, you can change to another talking point.
- Teach them about infertility. “Did you know that 10% of women have infertility as well as the National Institute of Health says that men are part of or the cause of 40% of infertile couple cases? What about my partner or I possibly being one of these people? Either way, asking that may cause stress for people struggling to decide if they want to try to have a kid, let alone whether they can have kids or not because of issues such as infertility.”
- Is someone being pesky and won’t stop asking about having kids? Be assertive! Say something like, “That seems to be of great interest to you, but I/we don’t feel comfortable discussing that right now.”
- Answer indirectly. Say something like, “I’m not sure, but I/my partner and I are figuring it out.”
- If you get emotional when the question comes up, walk away and take time to breathe. If/Whenever you feel comfortable, you can choose to come back and explain the situation. Then, tell them that this is a hard question for you to answer and not something you wish to discuss, no matter how well-meaning they are.
When to Talk about Infertility with a Romantic Partner
Many people struggle with when to introduce the topic of infertility with a regular partner. Here are two possible ways to do it:
- If you want to make sure that your partner will care for you, no matter what family you build, then you tell your partner on your first date about your infertility.
- Want to wait longer to see how the relationship unfolds? Once you and your partner choose to start a sex life as well as you feel comfortable discussing it, then you can talk about it.
How to Talk about Infertility with a Romantic Partner
Once you decide when to discuss infertility with a partner, here are some thoughts on how to discuss it:
- Use open-ended questions such as what your general family plans are and if you’re open to pursuing fertility treatments. Discussing your and your partner’s positions on these topics can help create balanced as well as open discussions on these topics in the future.
Resources for Overcoming the Challenges of Infertility
- Register for a free recording of TSF’s webinar- Choosing Your Journey: A Discussion on Family Planning. It discusses alternatives to having children biologically.
- Adopting a child is a great option. To learn one family’s inspiring story about how they founded their family on adoption, register for the free webinar recording of Adoption 101: From My Experience. Additionally, you will also learn tips about what to expect during and after the adoption process.
- If you are struggling with anxiety due to infertility, the Anxiety: Healthy Coping Strategies webinar can help you! This anxiety webinar discusses what anxiety is, what causes it, and, most importantly how to cope with it. You can also read about social anxiety here.
- Want to learn about fertility and reproductive health and also how you can overcome reproductive health challenges alongside your doctors? Then, read TS Clinical Guidelines and Reproductive Health.
Takeaway - What you can do now
Infertility is an important and daunting subject to talk about with both strangers and your loved ones. However, we at TSF hope that this article helps you get started with having this tough conversation.
Acknowledgements: This article was written by Elizabeth Rivera, TSF’s Blog Content Coordinator, and was edited by Julianne Franca, a TSF volunteer blog writer, and Susan Herman, TSF’s volunteer Primary Editor. ©Turner Syndrome Foundation 2021.