Being Rash

Issue #9 of “What’s Her Problem?”: Holter monitors and why medical professionals shouldn’t be so rash in their judgment of 'problem patients.'

Each issue of "What's Her Problem?" includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber on Substack to join the conversation in the private community Chat.

This week’s questions:

Do you ever feel like a “problem patient?” How do you advocate for yourself when you have an uncommon medical need? Have you had a doctor or nurse respond rashly?

Interview Series-Sarah Hom, Accessibility Expert and Disability Justice Advocate

Issue #8 of "What's Her Problem?": Challenges in accessibility for theatre patrons and employees

Welcome to the very first installment of the “What’s Her Problem?” Interview Series!

I had the great pleasure of speaking to Sarah Hom, the Director of Culture and Engagement, Audience Strategies at Roundabout Theatre Company in New York. Sarah is also the Founder of Lipstick and Cane Access and Disability Inclusion Consulting. She is a senior level arts administrator, consultant, trainer, and speaker. Her specialties include accessibility, belonging, and crafting meaningful customer experiences. (IG: lipstickandcane)

We took a deep dive into challenges in accessibility for theatre patrons and employees, as seen through Sarah’s body of work, for which she just received an achievement award, as well as her personal experiences.

Just a few notes about the Interview Series before you start watching/listening to Sarah and I chat about all things accessibility and inclusion in theatre:

* This episode of the Interview Series is FREE to all “What’s Her Problem?” subscribers, regardless of your subscription level. However, all future Interview Series videos will be available only to Paid Subscribers and Open-Hearted Supporters. Upgrade now to be sure you won’t miss any future content.

* Since the Interviews are in video form, you can choose to watch or just listen.

* The audio will still be available on the “What’s Her Problem?” RSS Feed.

* There is a link to the written transcript of our conversation at the top of this post, just below the video, if you prefer to read.

* Closed captioning is also available by clicking the “CC” button on the video.

* As always, there are questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.

This week’s questions:

As a theatre-goer, have you encountered accessibility issues? What would have made your visit feel more inclusive? Have you ever attended an autism-friendly, sensory-friendly, relaxed, audio-described, or ASL-interpreted performance? If so, how was your experience?

"The Pitt" and Doctor-Centered Media

Issue #7 of "What's Her Problem?": TV medical dramas tend to focus on the doctors, not the patients.

Video: Actor Noah Wyle sits on a couch and talks about his Emmy-nominated show The Pitt on The Kelly Clarkson Show. Kelly Clarkson sits in an armchair, facing him. Note: I do not own the rights to any media from “The Kelly Clarkson Show,” nor any other NBC property.

[Spoiler Alert: This post contains spoilers for The Pitt, ER, and Grey’s Anatomy]

Each issue of "What's Her Problem?" includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.

This week’s question:

Are there any patient-centric medical dramas that I should watch? Or patient stories from doctor-centric shows that have stood out to you? If you could write a patient-centric show from scratch, what would you want to see in it that reflects your own experience?

References:

“The Pitt Is a Show About.” Anne Helen Petersen 5/1/25

https://variety.com/2025/tv/news/the-pitt-noah-wyle-john-wells-er-differences-real-time-format-1236283401/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6876170/#:~:text=The%20Press%20Ganey%20survey%20uses,visits%20in%20July%201%2C%202018.

Failing Up

Issue #6 of “What’s Her Problem?”: Step therapy purports to save patients and insurers money, but it frequently puts patients at risk.

Each issue of "What's Her Problem?" includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber on Substack to join the conversation in the private community Chat.

This week’s question:

Have you participated in a step therapy program (knowingly or unknowingly)? Were there any adverse effects to your health as a result?

Links and References:

https://steptherapy.com/wp-content/uploads/2023/07/Flyer-Safe-Step-Act.pdf

https://steptherapy.com/step-therapy-legislation-by-state/

https://dawnlevitt.substack.com/p/pill-rhymes-with-kill-for-a-reason?r=heamx&utm_campaign=post&utm_medium=web&triedRedirect=true

https://www.healthinsurance.org/glossary/step-therapy/

Shan DM, Greenzaid JD, Greene E, Feldman SR. Analyzing the Benefits and Costs of the Safe Step Act on Patients, Physicians, and Insurers. J Psoriasis Psoriatic Arthritis. 2024 Jul;9(3):115-120. doi: 10.1177/24755303241253203. Epub 2024 May 7. PMID: 39301213; PMCID: PMC11361492.

https://www.neurology.org/doi/pdfdirect/10.1212/CPJ.0000000000000208 /https://doi.org/10.1212/CPJ.0000000000000208 

Bourdette, D. N., Hartung, D. M., & Whitham, R. H. (2016). Practices of US health insurance companies concerning MS therapies interfere with shared decision-making and harm patients. Neurology. Clinical Practice, 6(2), 177–182.

https://www.aan.com/siteassets/home-page/conferences-and-community/regional-conferences/neurology-on-the-hill/participant-page/24-step-therapy-talking-points-premium-data.pdf

Holding My Heartbeat in My Hands

Issue #5 of “What’s Her Problem?”: Living a life in which your health is dependent on technology is both miraculous and terrifying.

How I felt after my first implanted cardiac device was removed after 8 years, and I was able to keep it.

Each issue of "What's Her Problem?" includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.

This week’s question: If you have an ICD, a pacemaker, or a defibrillator, how do you feel about being at least partially dependent on a piece of technology? If you don’t have one, how do you imagine it would feel to you? And would you want to keep it after it was replaced with a new one?

The Doctor Will See You Now(ish)

Issue #4 Of “What’s Her Problem?”: Health care wait times show respect for neither the patients nor the doctors.

This week’s question: What suggestions do you have for bringing back the R-E-S-P-E-C-T (sing it with me!) to healthcare? What is the longest you’ve sat in a waiting room to see a doctor? When is it worth it? How do you decide?

Let's Discuss

Issue #3 of "What's Her Problem?": Peer support groups benefit both participants and group leaders.

Why peer support groups for chronic illness are so helpful, through the lens of my experience moderating an online discussion group for Hypertrophic Cardiomyopathy.

This week’s question: Have you attended a peer support group for an illness or disability? What benefits did you get from your participation, and what were the challenges?

Good News

Issue #2 of "What's Her Problem?": Those of us with chronic illness are so used to receiving bad news from doctors that we don’t stop to celebrate the small wins when we do receive good news.

How I'm learning to handle good news from doctors, instead of always waiting for the other shoe to drop.

This week’s question: Do you celebrate your small wins with your health? If so, how do you celebrate? If not, why not? Do you subscribe to the progress principle?

What's Her Problem?

Issue #1: People make assumptions about what chronic illness and disability "should" look like.

My unfortunate encounter with a TSA agent and the origin story for calling my Substack "What's Her Problem?"

Today’s question: How do you handle situations where the validity of your illness or disability is questioned?

Visit whatsherproblem.substack.com to subscribe.

A brief introduction to "What's Her Problem?," a weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability. From writer, patient advocate, and disabled chronic illness warrior Debra Rafson. The voiceover/audio recording of every post will appear in this RSS feed, so subscribe now to stay up to date. whatsherproblem.substack.com