A New Diagnosis is Like Learning a New Language

A New Diagnosis is Like Learning a New Language

A New Diagnosis is Like Learning a New Language Issue #44 of “What’s Her Problem?”: To become fluent in your medical diagnosis, you need to start with the basics and keep studying. When I was diagnosed with the genetic heart condition Hypertrophic Cardiomyopathy (HCM) in 2011, one of the many aspects that overwhelmed me was the medical terminology. Cardiologists and nurses were bandying about phrases like ejection fraction, left ventricular outflow tract obstruction, septal wall, and mitral regurgitation. I felt like they were speaking a foreign language that I had yet to learn... This week’s question: What terminology that you had never heard until the start of an illness or disability is part of your everyday vocabulary now? Related Posts: https://whatsherproblem.substack.com/p/reflections-on-the-2025-hcma-annual?r=heamx [https://whatsherproblem.substack.com/p/reflections-on-the-2025-hcma-annual?r=heamx] https://whatsherproblem.substack.com/p/good-news?r=heamx [https://whatsherproblem.substack.com/p/good-news?r=heamx] Links/References: Hypertrophic Cardiomyopathy Association (HCMA) [https://4hcm.org] WomenHeart [http://womenheart.org] https://www.youtube.com/watch?v=Miysyg1Qt_0 [https://www.youtube.com/watch?v=Miysyg1Qt_0] A Guide to Hypertrophic Cardiomyopathy: For Patients, Their Families and Interested Physicians (Third Edition) [https://amzn.to/4eZ8Fjo] Interview Series: Lisa Salberg [https://whatsherproblem.substack.com/p/interview-series-lisa-salberg-founder?r=heamx] Guide to Integrative Medicine [https://amzn.to/4tRk8Wb] Ejection fraction = The percentage of blood your heart pumps out each time it beats. Left Ventricular Outflow Tract (LVOT) = The muscular channel in the heart where oxygen-rich blood passes from the left ventricle into the aorta. Often obstructed in Hypertrophic Cardiomyopathy. Septal wall = The wall of the left ventricle, or lower chamber, of your heart. Mitral regurgitation = Blood flowing back the wrong way after passing through the mitral valve.  https://www.aapc.com/resources/medical-terminology [https://www.aapc.com/resources/medical-terminology]  https://learningcenter.unc.edu/tips-and-tools/learning-a-second-language/#:~:text=Learning%20a%20new%20language%20involves,common%20pitfall%20for%20language%20learners [https://learningcenter.unc.edu/tips-and-tools/learning-a-second-language/#:~:text=Learning%20a%20new%20language%20involves,common%20pitfall%20for%20language%20learners]. https://www.healthcentral.com/condition/atrial-fibrillation/afib-with-rapid-ventricular-reponse-rvr [https://www.healthcentral.com/condition/atrial-fibrillation/afib-with-rapid-ventricular-reponse-rvr] Disclaimer: As an Amazon Associate, I earn from qualifying purchases. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe [https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

How I Learned to Drive Again

“I’m an excellent driver.” -Dustin Hoffman as Raymond Babbitt in the 1988 Oscar-winning Best Picture “Rain Man” I love driving. I always have. Even when I was a kid, I was always trying to find toys I could drive or driving rides at amusement parks. Of course, I had a Little Tikes Cozy Coupe…you know, the red plastic car that you drive with your feet, with the yellow roof, the big set of eyes on the front, and a steering wheel. Even my Barbie doll’s bright red Ferrari was a prized possession. In Disney World, while my peers were clamoring to ride Space Mountain, I wanted to drive the gas-powered cars at the Tomorrowland Speedway or, once I was old enough, the water sprite boats you could rent at the Polynesian Resort. And go-karts? Yes, please! But I used to take driving for granted. Once I got my license, there were only two stretches of time when I didn’t drive: the summer of 2000, which I spent studying abroad in Spain and traveling around Europe on planes and trains; and the first 9 weeks after I had open-heart surgery, while my sternum healed. All that changed in June 2019, when I lost my ability to walk and, with it, my ability to drive. My coordination was taken from me by what I would later discover was an Autoimmune Sensory Neuropathy. It forced a driving hiatus that lasted nearly 3 years and left me yearning for a missing piece of my independence.... This week’s questions: What does driving mean to you? Have you ever had to pass a driving assessment test as an adult? Related Posts: https://whatsherproblem.substack.com/p/breaking-up-is-hard-to-do?r=heamx [https://whatsherproblem.substack.com/p/breaking-up-is-hard-to-do?r=heamx] This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe [https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

A Letter to My Late Physical Therapist

Two years ago this week, my physical therapist, a crucial part of my medical care team, was killed, at age 43, in a tragic accident. I wrote this letter to her the week after her passing, as a way to process my emotions. I’ve edited it lightly, and I added a post-script, but it remains largely unchanged otherwise. Consider yourself forewarned: you may want to have some tissues on hand as you read or listen to this one. June 15, 2024 Dear Caryn, For the first time in almost four years, I went to my physical therapy appointment on Thursday with a sense of utter dread. Not because of the exercises I would need to engage in or the therapist I had been assigned to work with, but because I knew you wouldn’t be there. That day or ever again.... This week’s question: How have you grieved a non-sensical loss? Related Posts: https://whatsherproblem.substack.com/p/chronic-illness-is-a-team-sport?r=heamx [https://whatsherproblem.substack.com/p/chronic-illness-is-a-team-sport?r=heamx] This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe [https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

Guest Post: Karen Walter, LMHC

May is Mental Health Awareness Month! Mental health and chronic illness go hand-in-hand, and as May comes to a close, I wanted to acknowledge that it’s Mental Health Awareness Month. I invited a guest writer to share her thoughts on this topic with you, and I’m pleased to introduce Licensed Mental Health Counselor Karen Walter [https://launchpsych.com/therapists/karen-walter-lmhc/]. Karen holds a Master’s degree in Counseling Psychology from Salem State University and is committed to fostering growth through compassionate and collaborative care. With nearly a decade of experience supporting children and families across community, school, summer camp, and outpatient settings, she has developed a deep appreciation for the unique strengths and challenges each individual and family brings. Her time as a clinician in an elementary school especially shaped her holistic approach to creating a safe and supportive space where clients can feel truly seen and heard. The challenge of learning to live with chronic illness is one of the many specialties that Karen treats in children and adults. She works at Launch Psychological Associates [https://launchpsych.com/about/about-us/] in Massachusetts, a woman-owned, close-knit group of clinicians who are passionate about helping their clients live fully. Telehealth appointments are available. I want to thank Karen for openly sharing the story of her own chronic illness and how it informs her work as a therapist. So much of what she wrote resonated with me, and I know it will for many of you as well. Here is Karen Walter’s story... This week’s questions: How do you balance your mental health and physical health, especially if you deal with chronic illness? Which therapeutic techniques have been most beneficial for you? Related Posts: https://whatsherproblem.substack.com/p/guest-post-dawn-levitt-two-time-heart?r=heamx [https://whatsherproblem.substack.com/p/guest-post-dawn-levitt-two-time-heart?r=heamx] https://whatsherproblem.substack.com/p/lets-discuss?r=heamx [https://whatsherproblem.substack.com/p/lets-discuss?r=heamx]   This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe [https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

Interview Series: Jennifer Crystal, Author, Educator, and Writing Coach

This is a free preview of a paid episode. To hear more, visit whatsherproblem.substack.com [https://whatsherproblem.substack.com?utm_medium=podcast&utm_campaign=CTA_7] 0:00-12:11      Introduction and the importance of patients being listened to and believed 12:11-20:17    Jennifer reads a passage from One Tick Stopped the Clock 21:30-24:09    How to find a Lyme Literate Medical Doctor (LLMD) 24:11-33:39    Family dynamics and chronic illness 33:40-40:31    Friendship and writing to heal 40:32-46:04    How illness impacts identity 46:05-48:30    Wrap-up Jennifer’s Website: www.jennifercrystal.com [http://www.jennifercrystal.com] Jennifer’s New Substack, Writing Your Life:  https://jennifercrystalwriter.substack.com/ [https://jennifercrystalwriter.substack.com/] Follow Jennifer on Substack: https://substack.com/@jennifercrystalwritingyourlife [https://substack.com/@jennifercrystalwritingyourlife] Purchase One Tick Stopped the Clock here: https://amzn.to/4w3Z68L [https://amzn.to/4w3Z68L] About Jennifer’s Other Published Works: https://www.jennifercrystal.com/publishedworks [https://www.jennifercrystal.com/publishedworks] Global Lyme Alliance Patient Support Provider Search Directory:   https://www.globallymealliance.org/lymedoc [https://www.globallymealliance.org/lymedoc] Health Story Collaborative, Writing for Expression and Connection Meetups: https://www.healthstorycollaborative.org/writing-info [https://www.healthstorycollaborative.org/writing-info] International Lyme and Associated Disease Society Provider Search: https://www.ilads.org/patient-care/provider-search/ [https://www.ilads.org/patient-care/provider-search/] Jennifer’s upcoming Writing to Heal classes at Grub Street Creative Writing Center: · The next Writing to Heal Workshop [https://substack.com/redirect/70201d9c-020c-4bd0-a667-8cf4aa64d61f?j=eyJ1IjoiaGVhbXgifQ.z1w-3NaGt6HzSOWQciwGxJ-4rMAQfBsmGEIdJJYtBXM] runs for six weeks starting Thursday, June 11th from 6:00-9:00PM ET. The class is currently full, but feel free to add your name to the waitlist, as spots do sometimes open up. · Looking to learn about the Writing to Heal Immersive Program? Join Jen for a remote Open House [https://substack.com/redirect/fa22cc88-662d-4e20-837f-2a3cccd0c934?j=eyJ1IjoiaGVhbXgifQ.z1w-3NaGt6HzSOWQciwGxJ-4rMAQfBsmGEIdJJYtBXM] on Thursday, May 21st at 6:30PM ET. · Ready to apply for the 2026-27 program? Applications [https://substack.com/redirect/81319037-8009-4fd2-bd9e-1e83a62960b9?j=eyJ1IjoiaGVhbXgifQ.z1w-3NaGt6HzSOWQciwGxJ-4rMAQfBsmGEIdJJYtBXM] are now open! They are due by June 30th.   Disclaimer: As an Amazon Associate, I earn from qualifying purchases.