“You are in control of what happens to your body” is a phrase I have often said to my patients. In the nine years I’ve worked as a registered nurse, I frequently encountered patients and families who felt defeated, unheard, and powerless in making decisions about their own health.
Many of them shared that they’re not sure if they could ask their highly pressing questions or share their concerns due to varying reasons such as fear of being seen as ignorant or over reacting, or fear of being told they’re wrong. In some cases, patients have tried to raise their questions or concerns to providers, only to feel dismissed and even more unsure than before the clinic visit, so they’ve felt it best not to say anything anymore.
If you’re someone who has either experienced this before or is currently going through similar situations, I want to tell you, “You are in control of what happens to your body.”
You may ask, “…but how?” Let me share some tips from my experience as a nurse.
Establish Your Mindset
The first and the most important thing to do, way before scheduling any appointment, is adopting the mindset that “I decide what happens and what I don’t want to happen for my body”. If you’re a parent, this same mindset applies for your child: “I decide what happens and what I don’t want to happen for my child”.
If you struggle with speaking up during appointments, repeat this mantra to yourself before you enter the room. It will help you feel empowered to say what’s on your mind and ask any questions.
Remember: Your Voice Is Your Power
When interacting with any medical provider, it is incredibly common to hesitate before raising any concerns or questions. However, you must remember that your voice, speaking up, is a power that you have. In fact, you have every legal and ethical right to actively ask any questions, understand your options, and participate in your own care. Remind yourself that this is your right.
Next, it is also very important to remember that doctors rely on what you tell them to make decisions that are right for you or your child. Without sharing your thoughts and input, doctors may assume that you agree with the care plan.
What Should I Ask?
Before The Appointment
If you aren’t sure what to ask the doctor, these questions below are great starting points to ask yourself first. Your answer to these questions will help form your personal health goal:
- What do I want to happen?
- How do I want to feel?
- What do I want to be able to do?
Another way to get ideas for what to ask is simply doing your own search on the internet. I will caution you not to believe everything the internet says, especially if the information is not from trustworthy sites like the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Turner Syndrome Foundation (TSF). But gathering information from trusted online sources can be a great starting point so you feel more prepared when entering the appointment.
During The Appointment:
Use the “Ask Me 3” Questions technique (Winiger et al., 2021). This is a validated tool created by healthcare experts. During the appointment, make you sure you get answers to these three questions:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
Team Up Using Clinical Guidelines
Deciding on your next steps and care plan is a team effort. Just like with any team effort, hear out what the doctor or other healthcare team members have to share for recommendations or next steps. Then, work with them to come up with a solid plan that feels right to you or your child.
This is a tip for patients with Turner syndrome (TS), shared by a patient: “Bring the Turner Syndrome Clinical Practice Guidelines with you to appointments, so that you can back up what you’re saying! There’s practitioner and patient versions of it, and it’s very informative!”
Of course, this requires you to read and educate yourself about these guidelines. They are from a trustworthy source and readily available for public use. Share them with your doctor or healthcare team to get on the same page and make sure the care plan is aligned with the latest peer-reviewed practices for TS (peer-reviewed means many experts in the field made sure the research is true, accurate, and valid).
What About Referrals?
When it comes to figuring out what referrals you need, this is another time when the Turner Syndrome Clinical Practice Guidelines come in handy. Here is an easy way to find out what the recommended referrals are from the Guidelines:
- Press “Control + F” on your keyboard
- Then type “referral”
- You will see all the recommended referrals and when they should happen. It will highlight 21 “referral” words. Read each paragraph to make sense of what the referral is about and when it’s needed, and jot it down
- You can also download this as a PDF and manually highlight the recommended referrals there to bring along to your appointment
During the appointment, show these referrals to your doctor and talk about which referral is needed sooner and which can be done later, and make a plan.
What if the doctor doesn’t have much experience with TS but is willing to learn?
No doctor can be an expert on every specific diagnosis or condition. If a doctor you’re working with doesn’t have much experience with or knowledge of TS but is open and willing to learn, see this as an opportunity to learn together:
- Share Resources: Offer to send them trustworthy links or PDF documents from trusted organizations such as the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Turner Syndrome Foundation (TSF).
- TS Experts: Suggest connecting them with TS specialists or TS organizations for consultation.
- Teamwork: Approach the relationship as a team: The doctor brings medical foundations while you bring insights specific to TS.
Weighing Big Decisions
When talking about big decisions involving things like growth hormone and estrogen therapy, surgery, or fertility preservation, take the time you need to feel sure about your decision. It is important to work with your doctor as a team so that you feel comfortable with every treatment you plan to pursue.
What To Consider In The Decision Making Process:
- Understand The Purpose: Ask the doctor how the treatment supports long-term health goals (ex. Bone health, adult height, etc.) (Klein et al., 2018)
- Pros and Cons: Talk about the benefits and the risks, growth and development tracking, follow up appointments, and lab work needed for dose adjustments.
- Impact on Lifestyle: Talk about how the treatment can affect lifestyle, social life, habits, and hobbies.
- Timeline: If you or your child feel hesitant, it is completely ok to say “I would like a few weeks to review this information before making a final decision”. You do not need to provide an answer right after you are provided any options for treatment, unless it is a medical emergency.
What If I Feel Unheard?
Sometimes, even with the best intentions from both the doctor and patient, miscommunication can still happen. You may still feel like your symptoms were dismissed and your concerns were overlooked and not fully addressed. When this happens, there are things you can do:
- Clarify: If you have a patient portal, send a follow-up message to the care team: “I just want to follow up from my last visit. I still have some concerns. Can we discuss them during my next visit?”. If there is an option for a virtual visit, ask if you can discuss through there and when is the next available virtual visit.
- Second Opinion: You have the right to see a different doctor and ask for a second opinion. If doctors can regularly consult with their colleagues, so can patients. You may find reassurance through a fresh perspective from another doctor.
- The Right Fit: If, in spite of efforts to work together, you still don’t feel like your patient-doctor collaboration is not working, you have the right to look for a different provider whose communication, values, and approach to treating TS work better with your values and your needs.
Finding a Doctor Familiar with Turner Syndrome
As a patient, you should feel comfortable and confident in the care you receive, and finding the right doctor can make all the difference. If you are able to find a doctor who has experience with TS, even better!
Consider connecting with a Specialized Center of Care or TS Clinic near you, if there is one. These centers bring together providers from a variety of specialties to provide comprehensive care, all in one place.
You may also reference TSF’s list of Professional Members, who are healthcare professionals committed to advancing care for individuals with TS.
In addition, consider asking others in the TS community for referrals of providers they have worked with, like in our Star Sisters online group.
Finally, we are always looking to expand our list of providers to include on our website. If you have a provider you have loved working with, please submit our provider referral form so we can get in touch with them!
References
Klein, K. O., Rosenfield, R. L., Santen, R. J., Gawlik, A. M., Backeljauw, P. F., Gravholt, C. H., Sas, T. C. J., & Mauras, N. (2018). Estrogen Replacement in Turner Syndrome: Literature Review and Practical Considerations. The Journal of Clinical Endocrinology and Metabolism, 103(5), 1790–1803. https://doi.org/10.1210/jc.2017-02183
Winiger, A. M., Shue-McGuffin, K., Moore-Gibbs, A., Jordan, K., & Blanchard, A. (2021). Implementation of an Ask Me 3 ® education video to improve outcomes in post-myocardial infarction patients. American Journal of Preventive Cardiology, 8, 100253. https://doi.org/10.1016/j.ajpc.2021.100253
Written By Esther Kang, TSF Volunteer Blog Writer and designed by Adrianna Verzolini
© Turner Syndrome Foundation, 2026
Discover more from Turner Syndrome Foundation
Subscribe to get the latest posts sent to your email.
