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SHOW NOTES:
In this deeply personal episode of the Thrive x Strive Musician Podcast, our host, Amy, shares her recent journey through the complexities of the healthcare system. After undergoing surgery for a tethered spinal cord and facing numerous challenges, Amy opens up about her struggles with self-doubt, the relief of validation, and the ongoing journey toward understanding and managing their health condition. And how musicians can also benefit from those lessons.
Key Highlights:
Personal Life Update: Amy reflects on the emotional and physical challenges faced before and after the March surgery, revealing insights into dealing with a rare condition and its impact on daily life and professional pursuits.
Navigating Healthcare: Amy discusses strategies for tackling self-doubt when facing complex medical issues and the importance of self-advocacy in seeking accurate diagnoses and effective treatment.
The Power of Self-Validation: A deep dive into the significance of trusting one's own experiences and feelings in the context of healthcare and how this self-validation can be a key factor in navigating the healthcare system.
Full show notes will be on www.amywangviolin.com/podcast/
This podcast is only on YouTube: https://youtu.be/ND-ggwW_Jus
So, if you are a disabled musician and love to talk about your story and experiences, you can reach out to thrivexstrive@gmail.com; or fill out the contact form on my website amywangviolin.com.
Full Transcript:
Hi, everyone, welcome back to Thrive x Strive Musician Podcast. And I'm your host, Amy Wang-Hiller.
Let's dive into the topic that many of us right now are facing is the cycle of self-doubt in self-validation in navigating the current healthcare system? And finding the right answer for our health.
First off, let's start with an update on my journey. The last time we talked was right before March tethered core surgery, and I kept wondering, What if all of these are just a mistake? What if the surgery reveals nothing? The fear of being labeled as a fraud, or worse being told that I have a conversion disorder, it weighed heavily on me. While all the symptoms I felt just felt impossible to be wrong. So the surgery did confirm that I did have a title spinal cord, and a little unfortunate prognosis were less likely to have returned in my motor function below my waist, we will delve deeper into the emotions and thoughts surrounding future episodes about grief.
While it was relieved for something that is confirmed, I was still at the beginning of understanding my cervical issues. So I took a solo trip to South Carolina in April for neurosurgeon consultation. That trip was a turning point. It brought relief and validation, even motivating me to want to restart my project for my dissertation. I wasn't imagined things. You know, I had spinal cord edema around my fifth and sixth vertebra, something had been overlooked previously despite being evident in imaging. I was offered surgery, but I was not so convinced as that was the right move, because I was having even higher cervical issues for over a year.
But the journey wasn't without setbacks. I had to be admitted to the hospital and fix my CSF leak, and I regained some strength in the nursing facility to be more independent during the day. So I was also told to wear a soft collar. Without proper guidance, letting me into the ER with a facial nerve injury. That was very disappointing. I encountered the same dismissive attitude from the same clinician who saw me earlier this year and saw my condition as psychologically triple. Thankfully, my facial droop was temporarily improved after I ditched my soft collar. In around the same time I received a second opinion from a surgeon experienced in EDS, he suggests me an invasive traction test to my cervical and to understand my neck issue further. I haven't made a step to do the test while I was waiting on the opinion, and managed to travel and and perform or was the SRI poor symphony orchestra, and it was a highlight in this challenging period.
So October was another significant consultation with my EDS, knowledgeable neurosurgeon, the third one. I even tried to be a tourist for a day in Washington DC, though that was complicated by my mis education due to the insurance and the pharmacy issues. But through all this, I found comfort in the confirmation of my research, my understanding of imaging and my symptoms, my self made timeline started to make perfect sense. So the confirmation of my diagnosis, the multiple cervical instability, that really the answer of my paralysis from the top neurosurgeon has really reached a night my motivation to restart not only my podcast, but the dissertation project final I feel like they somehow cure my imposter syndrome. It's amazing how understanding and validation can fuel our passion and drive.
Tackling Self-Doubt in Healthcare System
Now, moving into the heart of our topic today, let's explore the challenge many of us face in our house journeys: the cycle of self-doubt and self-validation. It is a toxic relationship with doctors who don't care or spend enough time to understand and believe the patient's symptoms. And we often feel like health professionals are too much of an authority. Wow, we forgot that we are our own bodies’ experts too. Dealing with undiagnosed rare diseases makes us tough people. But we still experienced this self-doubt. It's a common feeling.
This is something I, and many of you, have struggled with, especially when facing complex health symptoms. While my own journey was filled with self-doubt, every unconfirmed symptom and dismissed doctor's visit felt like a hit to my confidence. “Am I imagining this? What if I am mistaken?” It's particularly disheartening. When doubters give you a confused look and say, “Oh, I had never heard about that before.” Sometimes, I feel like I don't even want to bring up the next “crazy symptoms”; it's likely that it doesn't fit their understanding of my condition.
So here's what I learned: self-doubt often stems from not being heard and validated. It's crucial to find healthcare professionals who actively listen to and take your concerns seriously. While this may not be easy, it's worth the effort to receive the proper care, preventing further damage to your body.
And the first step is to document your symptoms in detail. Keeping a health diary can help track pain and symptoms. This practice is beneficial not only for the chronic ill and disabled community, but also for musicians who can learn their own body rhythms. For musicians dealing with play-related injury, it is possible with active prevention and management without further medical interventions. So, this can be a powerful tool during consultations for those with rare conditions. If necessary, seek for second, third, even fourth opinions. Remember, you know your body better than anyone else. And remember, you're not alone. There's a community out there for people who have been through similar struggles, reach out, share your story and listen to theirs. It's incredibly affirming and empowering.
Rare Patient Voice (Collaboration)
Now, let's shift gears to something I'm genuinely excited about. I'm thrilled to announce our collaboration with a fantastic initiative - Rare Patient Voice.
Rare Patient Voice is a platform that connects patients and caregivers to opportunities where they can share their experiences and insights. This is done through surveys and interviews that inform healthcare research and development. It's a powerful way for our voices to contribute to medical advancements and patient care improvements.
As a musician, and someone who has navigated the complexities of the healthcare system, I know how important it is to feel heard and understood. Our experiences, especially those that involve rare or difficult-to-diagnose conditions, are invaluable in shaping the future of healthcare.
This is where you come in. By signing up with Rare Patient Voice, you get the opportunity to participate in research studies that resonate with your experiences. And here's the best part - not only do you get to contribute to valuable research, but you also get compensated for your time. It's a meaningful way to make a difference while being acknowledged for your input.
So, how can you join? It's simple. Just visit my personal link: [Insert Personal Link - rarepatientvoice.com/rp/thriveonwheels]. I'll also make sure to put this link in the episode description for easy access. Signing up is straightforward, and once you're in, Rare Patient Voice will match you with studies that align with your profile.
Remember, your journey, your struggles, and your triumphs in health matter. By sharing your experiences, you're not only empowering yourself but also helping countless others who might be on a similar path.
I encourage you to take this step. Visit rarepatientvoice.com/rp/thriveonwheels and become a part of this incredible community. Let's use our experiences to drive change in healthcare.
The Importance of Self-Validation
It's important to have other's validating you from the community. But the only change is when you validate yourself. Self-validation is a powerful tool in our journey to understand and manage our health. This is about trusting yourself, your experiences, and your feelings. It's about recognizing that you are an expert when it comes to your own body.
Self-validation is about recognizing and embracing the legitimacy of your experiences and feelings. It's about saying, "I am not imagining this. My pain, my symptoms, they're real, and they deserve attention."
It's not always easy, especially when you face skepticism or ignorance in the healthcare system. I have not yet mastered this skill. After years of feeling invalidated, that moment in South Carolina was a turning point for me. When the neurosurgeon confirmed my condition, it felt like all my self-doubt had disappeared. It validated not only my symptoms but also my instincts. Validating yourself is a crucial step towards finding answers, building your care team, and receiving the right care you need.
So, I urge you to trust in your experiences. If something doesn't feel right, it probably isn't. Don't downplay your symptoms or your feelings. They are valid and deserve attention. and above all, keep believing in yourself.
As we wrap up today's episode, I want to take a moment to reflect on our journey together. We've talked about the rollercoaster of emotions and challenges in navigating the healthcare system, and I hope my story has resonated with you, offering both insight and comfort.
I'd love for you to continue this journey with me. If you're interested in following my day-to-day updates and getting a more personal look into my life, you can find me on Instagram. Just search for my name, Amy Wang-Hiller, or Thrive_on_wheels, and let's connect there. It's a space where I share more about my music, my health journey, and the little moments that make life special.
Closing note:
Before I sign off, I have a small request. If you've found value in our podcast, please take a moment to rate us and leave a review on your preferred podcast platform. Your feedback not only helps us grow but also enables us to reach and support more people in our community. Your voice, in this way, becomes a part of our collective journey.
Thank you for tuning in to today's episode on our Thrive x Strive Musician Podcast. Your support, your stories, and your presence in this community are what make this all worthwhile. Keep thriving, keep striving, and remember, you are not alone in your journey.
Until next time, take care of yourselves, and don't forget to spread a little kindness wherever you go.
See you in the next episode!
Visual Description of this episode Artwork:
The image features a promotional graphic for the "Thrive x Strive Musician Podcast" with Amy Wang-Hiller. It showcases a woman seated in a wheelchair, wearing a brown blouse and a pink skirt. She has her chin propped on her hands, elbows resting on her knees, and she's smiling slightly towards the camera. The wheelchair has pink details, and the background is a light, neutral color that complements the overall aesthetic. The podcast title is displayed prominently on the graphic, with the words "THRIVE STRIVE MUSICIAN" in large, bold, capital letters and "podcast with Amy Wang-Hiller" in smaller text. The style of the letter "X" in "EXTREME" is artistic and colorful, filled with a vibrant, stained-glass-like pattern that adds a creative flair to the design.