Turner Syndrome Foundation
One of the most challenging aspects of Turner Syndrome (TS) is knowing when and how to approach the TS diagnosis conversation. Whether you are a parent/caregiver or patient, read on to learn more about when and how to have this important conversation.
The Importance of Approaching the TS Diagnosis Conversation
We often dread having difficult conversations. This could involve delivering bad news, talking about a failure, or acknowledging a truth about ourselves to our loved ones. Sharing a TS diagnosis with your child, partner, friend, or family member is one of those conversations. You might be a parent contemplating how much information you should provide to your child–and at one age- about their diagnosis. Or you might be someone with TS who is having a hard time starting a conversation about your condition with your partner or friend. Difficult conversations are uncomfortable and unpredictable for all of us, but it is important to face them head-on instead of avoiding them.
"I was not open about my TS diagnosis, except with my family and husband, until I was about 50 years old. When I finally told a few close friends, it was wonderfully liberating and opened up a new network of support. Now I am sharing my journey with the TS community, my medical providers, and even genetics interns to help spread awareness."
Patients: Approaching the TS Diagnosis Conversation with Your Child
Why
Many parents of children with TS face the dilemma of finding the right time to share their diagnosis with them. The child might have had a traumatic and stressful experience during their diagnosis. It may seem easier just to delay the conversation. But withholding information could lead to negative experiences at various points in their child’s health journey.
In a 2006 research study by Sutton, et al, researchers interviewed 97 people with TS and 21 parents about their concerns and challenges related to TS. They found that 30% of those with TS mentioned that they were not informed about their condition in a timely and upfront manner. Many of the participants in the study learned about their condition later from their health care provider, by confronting their parents, doing their own research, overhearing conversations, or reading about it in school. These situations resulted in negative disclosure experiences.
The study participants advised the newly diagnosed to have open and honest communication within the family. According to them, those with TS are usually aware that something is not quite right with them. So it is better to explain the situation to them instead of keeping them in the dark and leaving them wondering about it on their own. Other research studies by Metcalfe, et al. (2011) and Goodwin, et al. (2015) have also suggested the importance of open communication between parents and children with genetic conditions like TS. Discussing the genetic risks throughout childhood can help people with TS cope better and manage with their condition.
Disclosing your child’s condition to them early can improve their emotional resilience and help them deal with their situation in a healthy way.
How
Here are some tips on approaching the TS conversation with your child:
- With an age-appropriate tone and vocabulary, do your best to openly talk with your child about their health. Include cognitive and social issues related to their TS diagnosis.
- If your child asks about why they are seeing multiple doctors for their treatment, try to explain it to them in a positive way. For example: “These different doctors will make sure you continue to live a healthy and happy life. It doesn’t necessarilyh mean something is wrong.”).
- Have an honest and open conversation. Answer your child’s questions, and attentively listen to their concerns. This will ensure the conversation will benefit both of you.
- Most importantly, take the time to reflect on your own emotions. Think about the journey that you and your child are going through before you speak with them.
You might need help starting the conversation with your child or finding the right words to say. Speaking with a medical provider, social worker, counselor, or even a trusted relative can help. Also, the Turner Syndrome Foundation’s (TSF) book Tina Talks Turner can be purchased in our online shop. Or you can watch our free webinar recording of Peer Support: Parenting a Child with Tuhttps://turnersyndromefoundation.org/product/shop_tina_book/rner Syndrome, which has more information about how to parent a child with TS.
Patients: Approaching the TS Diagnosis Conversation with Friends & Family
Why
As a person with TS, telling another person about your diagnosis is a very personal decision. Depending on your relationship with the other person, you may wish to tell them about it for a specific reason. For example, telling your trusted friend about your condition might give you emotional strength and support in dealing with your symptoms. You may wish to tell your educator about your condition so they might provide any necessary accommodations or create a positive environment to help you succeed academically. You may want to discuss fertility issues with a romantic partner. Or you may simply want to disclose your condition as a way to raise awareness about it within your local community.
How
Here are some tips for disclosing your diagnosis to your friends and family:
- Once you decide to share your diagnosis with a friend or a relative, approach them in a way that makes you feel comfortable. Pick an appropriate time and a private place to have the conversation.
- Before you approach them, you might want to outline what you would like to disclose. Try to keep your language as simple as possible, and only share whata you feel comfortable with.
- After explaining your diagnosis, allow them some time to process the information. This is important, especially with a significant other.
- Encourage them to ask any questions they might have. Honest and open conversation is the key to any good relationship.
Takeaway - What You Can Do Now
Sharing a TS diagnosis with your child, friend, or family member can be a huge but very important step in maintaining a healthy relationship or coping with TS. Being honest and open in your conversation can help you in finding support and living your truth.
Written by Dhruvi, TSF volunteer blog writer. Edited by Prabhat, TSF volunteer blog editor, and Susan Herman, TSF volunteer lead blog editor.
Sources
Clinical
TSF Resources
© Turner Syndrome Foundation 2021
