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/good-news?r=heamx

Links/References:

Hypertrophic Cardiomyopathy Association (HCMA)

WomenHeart

https://www.youtube.com/watch?v=Miysyg1Qt_0

A Guide to Hypertrophic Cardiomyopathy: For Patients, Their Families and Interested Physicians (Third Edition)

Interview Series: Lisa Salberg

Guide to Integrative Medicine

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://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

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“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

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

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.

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 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/lets-discuss?r=heamx

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

Jennifer’s New Substack, Writing Your Life:  https://jennifercrystalwriter.substack.com/

Follow Jennifer on Substack: https://substack.com/@jennifercrystalwritingyourlife

Purchase One Tick Stopped the Clock here: https://amzn.to/4w3Z68L

About Jennifer’s Other Published Works: https://www.jennifercrystal.com/publishedworks

Global Lyme Alliance Patient Support Provider Search Directory:   https://www.globallymealliance.org/lymedoc

Health Story Collaborative, Writing for Expression and Connection Meetups: https://www.healthstorycollaborative.org/writing-info

International Lyme and Associated Disease Society 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 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 on Thursday, May 21st at 6:30PM ET.

· Ready to apply for the 2026-27 program? Applications are now open! They are due by June 30th.

Disclaimer: As an Amazon Associate, I earn from qualifying purchases.

“It’s really a testament to who you are as a person, who you are as a community member, and who you are as somebody who wants to help others. I mean, that is truly, I would say, the hallmark of what it is to be a WomenHeart Champion, and now you are all part of this sisterhood, so congratulations to you.”

-Celina Gorre, CEO of WomenHeart, thanking the graduates of the 2026 Virtual Science & Leadership Symposium for sharing our stories

Throughout most of the month of April, I participated in the WomenHeart Science & Leadership Symposium. Now, as a proud graduate of their 2026 Virtual Class and a newly-minted WomenHeart Champion, I want to take you behind the scenes of my experience. Here are some of the highlights of what I’ve learned so far about being a Champion for other women living with or at risk of heart disease, as well as how I can make an impact for you and your community.....

This week’s questions:

How can I help you raise awareness about heart disease in women in your community or workplace? What support can WomenHeart provide for you? Let me know!

Related Posts:

https://whatsherproblem.substack.com/p/how-it-feels-for-someone-else-to?r=heamx

Links/References:

https://womenheart.org/

WomenHeart Support Network Map

join the SisterMatch program

become a WomenHeart Champion

The Gold Standard in Lyme Disease Testing

Issue #38 of “What’s Her Problem?”: When finances drive our medical decision-making, patients may miss out on receiving the best possible care.

May is Lyme Awareness Month!

There’s good news and there’s bad news. I usually give people the bad news first, but with you, I’m going to start with the good news, which is that 90% of this test has come back negative.

The bad news is that you did test positive for long-term Lyme.

My Functional Medicine physician spoke those words to me in October 2022 during a telehealth appointment. Recognizing the pivotal nature of what she said, I documented the precise way she said it....

This week’s questions:

Have you ever said no to a test that might have been diagnostically helpful due to the cost? Or been given a test that is known to be less accurate than another option?

Related Posts:

https://whatsherproblem.substack.com/p/interview-series-dr-wendie-trubow?r=heamx

https://whatsherproblem.substack.com/p/what-if-there-had-been-another-treatment?r=heamx

https://whatsherproblem.substack.com/p/my-heart-disease-has-copycats?r=heamx

Links/References:

https://www.cdc.gov/lyme/hcp/diagnosis-testing/index.html

https://www.cdc.gov/lyme/hcp/diagnosis-testing/index.html

https://www.lymedisease.org/lyme-biobank-study/

https://www.lymedisease.org/mylymedata-clinician-lyme-survey-report/

https://igenex.com/the-igenex-advantage/

Spoiler Alert! This post contains spoilers for HBO Max’s “The Pitt,” Seasons 1 and 2. Feel free to bookmark this and save it for later if you were planning to watch and don’t want any spoilers.

Last year, I wrote about Season 1 of “The Pitt,” which has since gone on to dominate awards shows like the Emmys, Golden Globes, and even the AARP Awards. Season 2, whose finale premiered last Thursday on HBO Max, continues in that tradition of excellence. The way the writers carry every thread and storyline from episode 1 through the to the season finale is an impressive feat. They have chosen to tackle challenges in the U.S. health care system ranging from ICE to palliative care, violence against healthcare workers to sexual assault, and supportive decision-making to alcoholism (and so much more). I want to highlight 4 of this season’s topics that stood out to me (AI in Healthcare, Physician Burnout, Health Care Finances, and Cardiac Resuscitation of Women), as well as some miscellany.....

This week’s questions:

Have you watched Season 2 of “The Pitt”? What issues or storylines stood out to you?

Related Posts:

https://whatsherproblem.substack.com/p/the-pitt-and-doctor-centered-media?r=heamx

https://whatsherproblem.substack.com/p/penicillin-anaphylaxis-and-the-allergist?r=heamx

https://whatsherproblem.substack.com/p/penicillin-anaphylaxis-and-the-allergist-257?r=heamx

Links/References:

https://www.ama-assn.org/practice-management/digital-health/more-80-physicians-use-ai-professionally-ama-survey#:~:text=The%20physicians%20surveyed%20were%20generally,interpret%20radiology%20or%20pathology%20results.

https://pubmed.ncbi.nlm.nih.gov/37972797/#&gid=article-figures&pid=figure-1-uid-0

My Heart Disease Has Copycats

Issue #36 of “What’s Her Problem?”: When several heart conditions look the same, how does the patient get the right diagnosis?

My ears perked up last fall at the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting. Many doctors have told me there’s no known connection between two of my primary medical diagnoses: Hypertrophic Cardiomyopathy (HCM) and autoimmune sensory neuropathy. That I am probably just unlucky to have both. But one of the presenters mentioned a correlation between neuropathy and a heart disease called Cardiac Amyloidosis....

This week’s questions:

Do you, or someone you know, have a disease that was difficult to diagnose because it closely resembled another disease or condition? What was your process of getting to the right diagnosis?

Related Posts:

https://whatsherproblem.substack.com/p/reflections-on-the-2025-hcma-annual?r=heamx

https://whatsherproblem.substack.com/p/weird-science?r=heamx

Links/References:

https://www.4hcm.org/amyloidosis

https://www.4hcm.org/amyloidosis

https://mcpress.mayoclinic.org/attr-cm/managing-the-heart-and-nerves-together-tips-for-living-with-attr-cm-and-neuropathy/

https://www.4hcm.org/danon

https://www.4hcm.org/rasopathies

https://www.4hcm.org/fabry

https://www.4hcm.org/pompe

https://www.4hcm.org/friedreich-s-ataxia

https://www.4hcm.org/prkag2

https://www.4hcm.org/how-is-hcm-diagnosed

https://my.clevelandclinic.org/health/diagnostics/cardiac-pyp-scan

https://whatsherproblem.substack.com/p/reflections-on-the-2025-hcma-annual?r=heamx

https://www.4hcm.org/bighearts

https://www.4hcm.org/center-of-excellence

Adventures in Event Venue Accessibility

Issue #35 of “What’s Her Problem?”: Attending events can become complicated with chronic illness and/or disability.

Note: It’s important to acknowledge that accessibility and accommodations aren’t one-size-fits-all. My experience doesn’t reflect access to ASL interpretation, Audio Description, closed captioning, sensory accommodations, or types of mobility challenges that are different from my own.

I love going to live events. Theatre, concerts, sports, I enjoy them all. But what used to be part of my professional day-to-day or a fun outing has become much more challenging with chronic illness and disability. Although I try to take the approach that it’s better to go and be a little complicated than not to go at all, the truth is that I do go to events less now than I used to.

Having recently attended my two favorite events of the year, I wanted to document some of my adventures in event venue accessibility challenges here. Let’s walk through my preparation process and experience of going to an event now, in its infinitely more complicated form than what I had to think about before I got sick.........

This week’s questions:

Tell me about your experiences with venue accessibility. Any notable things, good or bad, that an event venue has done to accommodate you, or not?

Related Posts:

https://whatsherproblem.substack.com/p/whats-her-problem?r=heamx

https://whatsherproblem.substack.com/p/interview-series-sarah-hom-accessibility?r=heamx