Self-advocacy and Turner Syndrome | Turner Syndrome Foundation

Peer Chat: Self-Advocacy and Turner Syndrome

self-advocacy

Written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation (TSF) intern and blog writer.

Self-advocacy is important for any patient who has Turner Syndrome (TS) and their caregivers. The ability to speak up for your needs is crucial to ensure access to the quality care you need. In this article, learn from Michelle, a woman who has TS, as she talks about her path to self-advocacy.

Michelle’s Story

As a woman who was diagnosed with TS 21 years ago, I am still finding my way in the world. That’s why I hesitated to write this blog post for someone recently diagnosed with TS or who has recently been dealt other, new life challenges. It’s hard to not act like a know-it-all, like I have some great wisdom to bestow. I might help you in your journey, and I might not. Either way, thank you so much for taking the time to read my advice and my story!

Why Is Self-Advocacy Important if You Have Turner Syndrome?

We must speak up as if our lives depend on it. Why? Because THEY DO!

Based on my own experience, the most important thing I have ever learned is this: Be your own advocate!

Advocate for yourself or your loved one at school, work, and the doctor’s office. I see too many people not challenging society’s stereotypes because they don’t advocate for themselves.

For example, being part of the TS community,  I have seen too many people with the condition deal with a common assumption that because they look younger, they are less experienced. Therefore, others may assume they are less capable of excelling. Consequently, people with TS are given fewer opportunities in life than others without the condition. This happens a lot because girls and women with TS often have shorter, less developed body types that make them look younger than their actual age. We must fight this trend of letting society’s expectations get the best of us.

We must speak up as if our lives depend on it. Why? Because THEY DO!

How I Became a Self-Advocate

As a teenager, I was often frustrated with the lack of information I was given by my parents and doctors regarding my various medical issues. Eventually, I got very angry–so much so that I decided, as a young adult, that, since my medical journey was a lifelong one, I needed to control it. After that decision, I began telling them that my medical issues and treatments needed to be directly discussed with me. After several polite but firm reminders, my strategy worked. What I wanted became the norm.

My parents started talking to me about any concerns they had about my health. My doctors started to help me consider what options I had regarding any necessary treatments. As a result, I got to make more informed, final decisions on how to proceed.

Impact of Self-Advocacy

At first glance, taking control of medical visits and becoming a self-advocate in the process may seem like small victories. In reality, it was actually a great triumph because it allowed me to:

  • set the tone for future interactions with my doctors,
  • be confident in advocating for my needs when I needed to,
  • learn how to live with TS on my terms, and
  • realize that nobody could define what TS meant for me but ME!

Self-Advocacy and Milestones

As some of you with TS and other life challenges may have already experienced, not everyone follows the “typical” timeline for milestones like graduating from high school or college and having a significant other. Often, these milestones come later than normal. Sometimes, people may not reach certain milestones at all. And that’s okay! 

Being a self-advocate is important because it empowers you to take a leap and try to achieve these milestones. It gives you the chance to prove people who say you can’t do something wrong.

Self-advocacy is also important because it helps you appreciate and celebrate the milestones you do reach, even if it takes longer than “normal.” For example, I am 37 years old, and, because of my TS, I am just learning how to drive. If anyone thinks I’m not going to treat myself when I finally get my license, they are sorely mistaken!

Conclusion

Self-advocacy is a lifelong process; you can keep learning how to do it better. I know I am still learning, especially at work, as that’s where I, personally, struggle the most. The good news is that when you wake up every day, you get a new opportunity to keep working at your advocacy skills and face the world.

So, what are you waiting for? Go ahead and make the most of it!


Resources to Help You Become a Self-Advocate

TSF has many resources you can use to learn how to advocate for yourself or your loved one:

Webinars

TSF has webinars that can help you learn how to self-advocate, such as “Building a Relationship with Your Pediatrician,” presented by Dr. Alexis Capozzoli and “Rights of Students with Turner Syndrome in a School Setting,” presented by Fitzgerald & Sadove, PLLC!

To access these webinars, click here to register for the recordings.

Website

TSF also has many resources on our website that can help you become a self-advocate. Click here to learn more. You will also find links to insurance assistance, travel assistance, and reimbursement assistance. Understanding the resources that are available is a first step to self-advocacy!

Educational Booklet

Furthermore, TSF provides an educational booklet about how to become a self-advocate called A Lifetime of Advocacy: What Individuals and Families Need to Know. Written by Valerie A. Powers Smith, Esq., TSF’s Legal Advisor, this book will help you learn how to self-advocate in a variety of health care service systems. It will also teach you how to find other federal and state resources that provide primary or additional healthcare coverage that align with your personal needs. Moreover, this book will help you learn how and when to arrange your lifetime plans to improve your personal health with conditions like TS.

When Valerie is not advising TSF, she spends her time advocating for individuals and families who have at least one child with TS or other special needs challenges in New Jersey, California, and Pennsylvania.

There are many reasons that becoming a self-advocate is so beneficial, and there are many resources TSF offers that can help you!

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