"What's Her Problem?" Podcast

Debra Rafson
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“What’s Her Problem?” Podcast is the audio version of writer and patient advocate Debra Rafson's weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more! whatsherproblem.substack.com

  1. 1d ago

    Interview Series: Sylvia Baedorf Kassis, MPH, Clinical Research Program Director

    0:00-1:04        Welcome back to the Interview Series 1:05-2:02        Introducing today’s topic 2:03-3:31        Sylvia’s Bio 3:32-4:30        Sylvia and Debra opening greetings 4:31-6:31        Why is Health Literacy Month important to Sylvia? 6:32-9:49        How Sylvia got into the field of Clinical Research 9:50-12:04      Sylvia’s interest in a Lyme vaccine trial 12:05-12:54    Clinical trials don’t mean you’re being “experimented on” 12:55-16:04    Clinical Research 101 16:05-18:14    MRCT Center Clinical Research Glossary 18:15-29:09    The History of Ethics and Justice in Clinical Research 29:10-36:39    Clinical Trial Phases 1-4 36:40-42:30 How patients become Clinical Trial participants 42:31-53:37 Informed consent, eligibility, and the risks and benefits of Clinical Trial participation 53:38-1:00:37 Debra’s Clinical Trial Experience and the importance of sharing research results with patients 1:00:38-1:04:47 The effects of research funding cuts at Harvard (A question from an Open-Hearted Supporter of “What’s Her Problem?” Subscribe now at whatsherproblem.substack.com to be able to ask your own questions to future Interview Series Guests!) 1:04:48-1:08:16 Wrap-Up   The MRCT Center Clinical Research Glossary: https://mrctcenter.org/glossary/    Clinical Trial Registries: https://clinicaltrials.gov    Sylvia Baedorf Kassis on LinkedIn: https://www.linkedin.com/in/sylvia-baedorf-kassis-mph-cyt-9418737/   MRCT’s Free Webinar Series: https://mrctcenter.org/events/ SUBSCRIBE TO "WHAT'S HER PROBLEM?": https://whatsherproblem.substack.com/subscribe SUPPORT WITHOUT SUBSCRIBING:https://buy.stripe.com/4gM4gzg9gge46iGgHBdMI00 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

  2. Sep 18

    Rediscovering Myself After Open-Heart Surgery

    Rediscovering Myself After Open-Heart Surgery Issue #54 of “What’s Her Problem?”: I felt lost after a major medical event…until I cleaned out my own storage unit. How I Lost Myself I sold the condo I owned for ten years the same week I had open-heart surgery. It wasn’t great timing. In the weeks leading up to these two huge, simultaneous events in the fall of 2016, friends and family volunteered their time to pack a decade of my life into boxes. I was too sick to do it myself. The boxes were stored in a local Boston-area storage facility for over a year, until I had them moved to one near my parents’ home, where I was enduring a much-longer-than-expected recovery process. Once my storage boxes and I were reunited, it would have been easy to get overwhelmed by the magnitude of the organizational project ahead of me. Each possession was frozen in time in whatever configuration my friends and family had left them during the packing process. Most people never get the opportunity to go back through their things and clear out the clutter of the past. If not for this employment gap/recovery period, I probably never would have tackled it myself. But over the course of the next 8 months or so, I sorted through my storage unit, box by box. Rather than finding all of the document scanning and box sorting tedious, I enjoyed it! The reason why was surprising. When I survived the surgery, I had a new lease on life but no idea who I was anymore. I had allowed Hypertrophic Cardiomyopathy (HCM) to turn me into a shell of my former self. I desperately wanted to find the real me again, and I found her buried in those boxes. I Am… While many of the boxes contained practical documents like bank statements, health insurance Explanations of Benefits (EOBs), and pay stubs, it was the less archival contents that were the most instructive about my old self. Here’s who I found and what I learned during my trip down memory lane: …a Reminiscer You could call me a pack rat, but never a hoarder. My pack rat tendencies stem from a deep sense of nostalgia. As such, I unpacked an extraordinary amount of memorabilia and souvenirs. That meant combing through collections of: autographs; ticket stubs; playbills; childhood artwork; sticker books; slam books (who remembers slam books?!); and special editions of magazines (especially my beloved Entertainment Weekly; RIP to the print edition), among so much more. It reminded me not to be ashamed of hanging onto the memories that evoke positive emotions or immediately take me back to moments in time I don’t wish to forget. My nostalgia is a key part of who I am. …a Reader Books filled box after box to the brim. There were children’s books, academic texts, at least 25 books in Spanish (a leftover from my college Spanish Major), and play scripts. I even had collections from my teenage years, including most of the Sweet Valley High series, which I purchased as soon as they became available at the Corner Book Shop in the New York suburb where I grew up. I also retained years’ worth of Summer Reading Challenge certificates of completion from the local library. Before donating most of the books, I took pictures to document their legacy. A select few remain in my bookcase and my pared-down storage unit. I remembered how much I love storytelling and that being a lifelong learner matters to me. After this project, I was inspired to take up listening to podcasts and to read more newsletters and personal essays. …a Photographer Everyone who knows me knows I take a lot of pictures. So, it should come as no surprise that the bulk of my scanning and documentation project was my photo albums. I have been a prolific photographer since the pre-digital camera days. I scanned thousands of pictures, dating back to my very first pink Le Clic film camera in 1988; the first photo on the first roll of film was of my best friend and I. I had the negatives and everything! And those hard copy photos and negatives ran all the way up until 2004 when I finally got a digital camera. Each photograph brought back a little piece of my life, a memory, a moment in time that my health-addled brain had let slip a little too far away. They served as the perfect reminder: don’t just take the pictures. Take them in abundance and look back through them again and again. …a Music Lover Remember cassette tapes? I had hundreds of them. Paula Abdul’s “Forever Your Girl,” Janet Jackson’s “Rhythm Nation,” and the soundtracks of “Les Misérables,” “Miss Saigon,” and “Newsies” blared from the cassette deck of my father’s car, whenever I could convince him to let me play them. I was an avid radio listener too. It started in Junior High School when I would record mix tapes on blank cassettes from the playlist of the local alternative station, then later the Pop/Top 40 hits of New York’s Z100. With the advent of CDs, I had hundreds more, in every genre, all filed neatly into CD binders. Music is my constant companion when I drive, but in the aftermath of my surgery, I was driving less. I knew I needed to make more of an effort to keep music in my life and take advantage of its mood-boosting properties. …a Writer My most forgotten self was in my writing. I unearthed songs, essays, short stories, and diary entries. There were notebooks filled with ideas (including some with fashion designs?!). My takeaway from finding my handiwork? I had the skills to write a memoir, which I started work on shortly thereafter. And I could write personal essays for a publication like “What’s Her Problem?”! It inspired me to sign up for my earliest writing classes. …a Traveler Every summer of my childhood, our family went on a road trip. The final destination was always my grandparents’ house in South Florida, but we found new routes from New York, and places to stop along the way, each year. Washington, D.C., Atlanta, Disney World, St. Augustine, Texas, New Orleans, Kentucky, Tennessee, Niagara Falls. And at each stop, I bought souvenirs. I collected magnets, brochures, postcards, keychains, pencils, t-shirts, and more. As an adult who went on my own trips, the souvenir collection only grew. For example, I kept every document from three trips to Spain and the European adventure with my best friend. I wasn’t sure how much travel would be possible for me after my surgery, and I certainly couldn’t have imagined the additional disability and complications that would arise only a few years later. But I knew that seeing new places and experiencing other cultures was important to me. …a Family Member and Friend Among the most educational items I had stored were letters, postcards, and greeting cards. I kept every one I’d ever received. So, unlike the financial documents, which I sent through the scanner and then the shredder without a deep dive into their contents, I sat down and read each hand-written note before scanning it for posterity. I read every birthday card, including the ones my mother had been saving for me since my 1st birthday. I pored over letters that my best friend and I exchanged during our summer vacations, when we had to be pen pals until we could re-unite at home. Cell phones, emails, and text messages didn’t exist yet. I read through folded notes my friends and I would pass to each other in the hallways between classes in Junior High School, back in the days when we were a little too catty for our own good. I had holiday cards and graduation cards from elementary school all the way through graduate school. There were: letters from ex-boyfriends; opening night cards from actors; drawings and letters from my godson and his brother; wedding, bridal shower, bachelorette party, and baby shower invitations; Valentine’s Day cards; thank you cards; birth announcements; and funeral programs. You name the life event; I had a record of it. I couldn’t help but think; “Look at all of these people who cared enough to send me real things in the mail! Look at the number of people who enjoyed working with me before I turned into a sick, grumpy mess! Look at all of these experiences I had!” That struck a chord with me. It was also a reminder that I had plenty of faults too. There were a few letters and postcards that I’m sure I didn’t respond to or reciprocate. Thank you cards I should have sent. Ways I could have been a less bratty kid or better big sister and friend at an earlier age. The ones that hit home the most were the cards and letters from my grandparents. My paternal grandmother outlived my paternal grandfather by about a dozen years, and it was no secret how lonely she was after he passed. When I was in college, she would send me handwritten letters, and she almost always included a clipping; an article from a newspaper or magazine that she thought I would find interesting. She ended the letters with a request for me to call her to discuss the clippings. I did call her sometimes. Other times, I didn’t. I was so wrapped up in being a college student and asserting my independence that I know I didn’t call in response to every letter I received. Now, the me who had lived through open-heart surgery wanted to be the kind of person who would have handled that differently. So to with my maternal grandmother. Her letters, written in perfect script penmanship, asked for less of my attention in return, but showed just how much she and my maternal grandfather wanted to be part of my daily life, even though they lived in Florida and I was in New York. I found letters congratulating me on visits from the tooth fairy and thanking me for weaving scarves for them with a loom I’d gotten as a birthday present. There were notes telling me about big trips they’d gone on and also about their weekly bowling outing. My maternal grandmother was always the most well-liked member of our family, because of her kindness and warmth, and re-visiting her letters was a good kick-in-the-pants r

  3. Sep 11

    Q&A with Erika Warren of Inciteful Med

    AI may be the hottest topic of conversation in the world right now, as it weaves its way into many aspects of our lives. Is it trustworthy or untrustworthy? A technological marvel or an environmental disaster? Or both? It all depends on who you ask. When it comes to healthcare, patient concerns about AI include accuracy and privacy. I wrote about a few of the ways AI is changing healthcare settings in response to Season 2 of The Pitt, and I was interested to expand my knowledge base on this subject. I was happy to have a recent chat on this topic with fellow Substack writer Erika Warren, who understands AI far better than I do. Erika is the Co-Founder of Inciteful Med, a library reference tool for patients and providers that aims to educate and spur conversation. It seems like AI on the surface, but throughout the course of our conversation, I was pleased to learn more about the product and how patients like me can use it to support our self-advocacy. Neither Erika nor I are trying to sell you anything here. The product is free to use, and you don’t even need to create an account to engage with it if you don’t want to. But after I gave it a trial run, I think there are benefits to this tool, and others like it, that are worth considering and sharing, and I appreciate that Erika took the time to answer my questions so you can learn more about Inciteful Med too. Debra Rafson: Erika, what is the origin story for Inciteful Med? How did the idea come about, and who is the team behind it? Erika Warren: Inciteful Med grew out of another product called Inciteful Academic, which is a free literature-discovery tool my co-founder Mike Weishuhn built six years ago as a side project. While researching something, he was manually tracking the citations and realized he was building a network graph on paper. Being a data scientist, he got way more interested in automating that than in his original topic. So, he created this tool that maps how academic papers connect to one another through citations - think of it like “six degrees of Kevin Bacon” but for academia. It’s a free forever tool that has close to 50,000 monthly users (primarily students, academics, librarians), and has been cited in over 150 peer-reviewed papers across 83 institutions in nearly 40 countries. So, the idea for Inciteful Med later came from necessity. Mike’s family member wasn’t feeling well, got a workup and found nothing except an incidental lung nodule. The standard protocol for a lung nodule is to monitor and recheck in six months. That is not reassuring to a patient or their family member. But instead of Googling or going to Reddit, Mike used Inciteful Academic to search the literature, and he found a paper titled “Multidector CT Features of Pulmonary Focal Ground-Glass Opacity: differences between benign and malignant,” that was published in 2012, and that paper stated nodules with the exact characteristics of his family member carried an 87% malignancy risk. That led to a second opinion at the Cleveland Clinic and a subsequent stage IIIA cancer diagnosis. Needless to say, waiting six months would’ve been catastrophic. That then raised bigger, messier questions like: Why aren’t protocols more specific? How do doctors review current literature? How is new information in research disseminated? Why is patient education so generic? But the actionable one for us was: could we build a tool that uses someone’s specific medical context to surface the relevant literature? And it turns out that, yes, we can. That’s what Inciteful Med is. Debra: I know you’re creating some disease-specific resource guides, in addition to the more general search tool. Thank you for generating one for Hypertrophic Cardiomyopathy (HCM) and asking for my feedback. After testing it out, I can see it serving as a helpful introduction to HCM, especially for someone who is newly diagnosed. I also really liked having the ability to compile a list of questions for my next doctor’s appointment and to take a deeper dive into issues related to my personal situation. What is your plan for disease-specific guides like these as opposed to the more general search features? Erika: Our main product is the personalized research tool where you ask a question, get answers cited from peer-reviewed literature on PubMed, with excerpts and source links so you and your doctor can see exactly where the information comes from. We believe transparency builds trust. You can sync medical records so it connects dots across specialties, which is where I’ve seen patients get the most benefit for their own education and self-advocacy. We’ve recently added clinical trials and drug-interaction data sourced from ClinicalTrials.gov and the FDA, and we’re building alerts that flag and summarize new research relevant to your case. The Patient Guides are different. They are standalone summaries of the literature on a specific condition. The HCM guide you saw pulls from 108 peer-reviewed articles and is organized by patient journey: overview, diagnosis, symptoms, treatment, management, risk, common questions, and leading researchers and institutions on that condition. The idea for Guides came about from an Inciteful Med user. He had reached out to us to share that he’d spent 20 years building his own research library on an ultra-rare sarcoma, called Solitary Fibrous Tumor (SFT), and he was blown away that our tool did a more comprehensive job than his decades of research. Through conversations, we came up with the concept of patient guides, and the SFT guide was the first one we published. We realized that SFT was not unique in its lack of patient education. 1 in 10 Americans (or 30 million people, roughly) live with a rare disease, and there are more than 10,000 known rare diseases, of which Debra: As a mom and a caregiver to your aging parents, how do you find yourself using Inciteful Med in your daily life? Erika: Not to sound dramatic or cheesy, but I’m not sure what I’d do without it at this point. Weekly, it’s our go-to for anything evidence-based – my husband’s looking up creatine, I’m researching perimenopause symptoms, whatever. My parents have their own accounts, and as their medical proxy, I also have them saved as patients with their records synced to my personal account. You can create multiple patient profiles in the tool. That’s mattered most during crises. My mom was in a car accident earlier this year. In the ER, the trauma team wasn’t factoring in her chronic conditions or her records, which directly affected her injuries that she sustained and treatment. I was asking Inciteful Med things like “my mom was in a car accident, what should I tell the doctors about her history?” and because it had ten years of her health history, it surfaced which conditions and medications to flag. I also used it to understand terms I was overhearing in triage (like hypoxic) and as scans were hitting the portal, I was able to interpret them and have questions ready when the doctors came to discuss them with us. In an in-patient setting like a hospital, no news is usually good news, but you can tie yourself up in knots waiting for an update and worrying. I’ve now used it in-patient three times, and each time it gave me an understanding to prep for doctor conversations, ask the right questions, and advocate. I cannot overstate how much calmer my nervous system has felt being proactive, informed, and in the loop. I shared my research with family so they could ask their own questions in the tool, which was a significant and surprising administrative lift off of my shoulders. My parents are in their 70s and they are not especially tech-savvy, but they use it on their own. It’s given them agency. Chronic illness care is often symptom management without a real conversation about quality of life. What matters to them is playing with their grandkid and walking their dog, and the tool has helped them make tradeoffs to protect that, which they didn’t realize was even a choice before. No one’s prepared for a medical crisis. I don’t even think it’s possible to prepare. But having Inciteful Med has directly influenced care for my family members, and it has brought a deeper meaning to the work every day. Debra: There is a lot of skepticism about AI, and I share in some of that skepticism, especially as it relates to writing quality and patient privacy. I know Inciteful Med uses an LLM to aggregate information, but the tool itself is based on medical research and is more like a library reference tool. Can you explain exactly how it works? Erika: Let me start by explaining how LLMs work. LLMs generate text from a probability map of how words relate, built from ingesting huge amounts of text. Given a prompt, they predict the most likely next words - like autocomplete, just much more sophisticated. That means accuracy depends on pattern frequency, not fact-checking. An example I use - Sjogren’s Disease was reclassified from “Syndrome” to “Disease” in June 2025 after close to 10 years of discussion and lobbying, but ChatGPT still defaults to “Syndrome” because that’s what its training data says is more probable. LLMs guess confidently; they don’t verify. That’s what causes hallucinations. It’s expected behavior, not a bug. LLMs are genuinely great at brainstorming and summarization because those are tasks where a good guess is the point. They’re bad at “what” and “why” questions that require actual fact-checking and verification. Inciteful Med uses LLMs only for their strengths. Our core technology is a literature index behind Inciteful Academic. We’ve processed the world’s open-access academic literature for keyword and semantic search. You ask a question, an LLM brainstorms the relevant clinical and research sub-questions, we search the literature for excerpts answering each one (often with hundreds to thousands of excerpts returne

  4. Aug 28

    Wheelchair Tennis Celebrates 50 Years

    “I wonder if you can play tennis in a wheelchair?” In 1976, a college student at the University of Utah got into an accident at a freestyle skiing competition in the Rocky Mountains. Born in Southern California in 1957, this kid who had grown up on water skis and surfboards had chosen to pursue skiing professionally. That day, he was helicoptered to a hospital in Salt Lake City, where he was told he was paralyzed from the waist down due to a “complete spinal cord injury” and would never walk again. After a few months grappling with the initial shock and physical impact of the accident and learning to use a wheelchair, he found himself in a rehab center thinking about how he wanted to be able to play sports with his friends again. Others suggested wheelchair basketball. His response: “I wonder if you can play tennis in a wheelchair?” That 18-year-old was Brad Parks, a 2010 inductee into the International Tennis Hall of Fame and founder of the worldwide sport Wheelchair Tennis, which is celebrating its 50th anniversary in 2026. In an episode of The Tennis Podcast that aired exclusively for their paid “Friends” tier on December 19, 2025, Parks gave an interview, and the hosts discussed his impact on the sport. One of the hosts, Catherine Whitaker, said: “So that’s how it started. In a rehab hospital. Just months/weeks after a devastating, life-altering accident as a teenager. Brad Parks decides he wants to be able to play tennis, and the fact that in order to do that, he needs to create a sport and the means to play that sport out of nothing, does not deter him.” Parks connected first with a former aviation specialist named Jeff Minnenbraker, who taught him to build his own aluminum, aerodynamic wheelchair for tennis. In 1977, he held the first wheelchair tennis exhibition in Los Angeles with 20 competitors participating. Wheelchair tennis had officially transitioned from “therapeutic activity to competitive sport,” as Brad continued to network, politic, and promote that sport. 1981 saw the formation of a player’s association, and the first tournament outside the U.S. was held in France the following year. In 1988, Brad led the creation of the International Wheelchair Tennis Federation. It became a full Paralympic Sport in 1992 and was integrated into the International Tennis Federation in 1998. The most consequential development was Wheelchair Tennis’ inclusion at events on the ATP Tour (men’s professional tennis) and the WTA (women’s professional tennis). The former Lipton tournament (now the Miami Open) was an early adopter in the 1990s. Among the Grand Slams, the Australian Open began showcasing Wheelchair Tennis in 2002. The US Open followed suit in 2005, the French Open in 2007, and finally Wimbledon fully embraced it in 2016. Today, there are more than 170 Wheelchair Tennis events annually in 50 countries across the world. Brad Parks told David Law of The Tennis Podcast, “where we are today is beyond my wildest imaginations.” The types of chairs, the amount of prize money, the number of players. He achieved all of that incrementally, and with lots of help, over 50 years. He says that the players are now seen as “athletes instead of inspirations.” What is Wheelchair Tennis? Let’s look at the logistics of the sport Parks created. According to Wikipedia: “There are three categories: Men, Women, and Quads; each category has singles and doubles tournaments. The Quad, the newest division, is for players who have substantial loss of function in at least one upper limb, but may include various disabilities besides quadriplegia….Quad players often tape the rackets to their hand, to compensate for loss of function…” The International Tennis Federation (ITF), who are re-branding as World Tennis, say “One of the fastest growing wheelchair sports in the world, wheelchair tennis is played in the same way as able-bodied tennis, with the only exception being that a wheelchair tennis player is allowed two bounces of the ball.” Check out a full run-down of the rules here, but in short, the scoring system of Love, 15, 30, 40, etc. applies, and the same courts are used as in non-disabled tennis. Athletes must submit medical data to the ITF and undergo a process of classification, based on their specific upper or lower body physical disability, to ensure they qualify for Wheelchair Tennis and are placed into the right category, which keeps the playing field level. The ITF has a cute video about that process here. In addition to Brad Parks, there are six other Wheelchair Tennis players in the International Tennis Hall of Fame, including 2023 inductees Esther Vergeer (NED) and Rick Draney (USA). If you think Roger Federer, Rafael Nadal, Novak Djokovic, and the Williams sisters are impressive: Vergeer won 559 of her last 560 matches before retiring and was ranked world #1 for 12 years. The Live Wheelchair Tennis Experience In 2024, I attended a Wheelchair Tennis demonstration. Sidling up to the court in my mobility scooter, I joined a small crowd of wheelchair users and non-disabled attendees. Among them was professional WTA player Shelby Rogers (USA), who lives nearby. As dusk fell, she got seated in a loaner tennis wheelchair, to try her hand at this version of the sport for the first time, with the help of members of the United States Tennis Association (USTA). On court with Shelby were regular Wheelchair Tennis players, as well as other newbies who volunteered, and they took turns playing some doubles points. In women’s tennis, Shelby, who has since retired, was very good. At the 2021 US Open, she beat world #1 Ash Barty (AUS) on Arthur Ashe Stadium during a night session in front of 25,000 screaming fans. But seated in the wheelchair, she was unsure how to hold her racket, how to navigate a backhand that required two hands when one had to stay on the wheelchair, and how to make quick positioning adjustments. Shelby took it all in stride and joyfully participated in the demonstration, while I watched intently from the sidelines, feeling too bashful to volunteer to try it myself. Since then, I’ve watched a little bit of Wheelchair Tennis, when it’s available on streaming platforms from the Grand Slam tournaments, and I’ve come to know the names of some of the most accomplished players. But I was keen to learn more. So, in March 2026, I attended the Miami Open, as I’ve done for many years. And this time, I focused one of my days on the inaugural Wheelchair Tennis Invitational Tournament. Two courts were simultaneously hosting Men’s and Women’s wheelchair matches (no Quad Players were in attendance at this event), and I designed a plan whereby I could see as much play on each court as possible. I began with a women’s match between Aniek van Koot (NED) and Angelica Bernal (COL). Next up was Gustavo Fernandez (ARG) vs. Martin de la Puente (ESP), then a change of court to catch men’s singles world #2 and doubles #1 Alfie Hewett (GBR) vs. Daniel Caverzaschi (ESP) and, finally, men’s singles world #1 Tokito Oda (JPN) vs. Charlie Cooper (USA). As they played, I tried to familiarize myself with the sights and sounds of the sport. I knew to expect the two-bounce rule, but there were many sensations I couldn’t have anticipated, which don’t come across on tv. Aniek van Koot had a feisty energy about her, and she stored extra tennis balls in the spokes of her wheels, safeguarding them until her turn to serve arrived. Those large wheels on the side are angled to provide balance and stability, with assistance from smaller wheels at the front and back of the chair. I took note of the way van Koot’s chair kept her left leg tucked back, yet positioned to stabilize her movements, using a guard in front of her shin and a strap around her foot. She was born with her right leg shorter than the left, and a series of unsuccessful surgeries as a kid led to her right leg being amputated above the knee. Throughout the day, I admired how each athlete positioned themselves in the chair to accomplish the same movements, while navigating their individual lower limb differences. Gustavo Fernandez’ enormous biceps showed off his power as he served, demonstrating how much core and upper body strength it takes to successfully complete that motion from a seated position. When his opponent, de la Puente, served, his wheelchair rose up, balanced on one wheel, as he reached to hit the ball, and the sheer force of that service motion caused his whole chair to come crashing back down with a bang, just before he zipped away to hit Fernandez’ return. In professional tennis, one-handed backhands are becoming increasingly rare, but in Wheelchair Tennis they are required. One hand must be on the wheelchair at all times, keeping it spinning and moving. Alfie Hewett, who is magnetic to watch, had such a smooth backhand and a quick spinning motion, never losing sight of the ball as he did a 360 and sped back towards it to win easily against Caverzaschi. Tokito Oda, too, has a beautiful backhand. Yet, with Oda, I found myself studying his chair. Like the other players, his had a low back and angled wheels, but this was a customized chair, featuring black and red rims. Part way through his match against Charlie Cooper, Oda signaled to the chair umpire that he needed assistance. I’m accustomed to seeing physiotherapists called to the court to assist injured or ill players. This, however, was a visit from a mechanic for his wheelchair, and the mechanic was the unassuming gentleman in his own wheelchair who happened to be sitting right next to me during the match. He wheeled right out onto the court with his repair kit and had Oda playing again in no time. I’ve written before about the losses or damage that can occur when an airline mishandles a mobility device. During that mechanical time out, I couldn’t help but wonder how these professional athletes, who spend the year travelling th

  5. Aug 21

    What Patient Advocacy Means to Us

    You could ask five people how they define Patient Advocacy, and I bet each one would say something different. This broad term can mean many things: asking more questions at your doctor’s appointment; disputing a bill with a hospital; getting an insurance company to reverse a decision; becoming a caregiver to a family member; ensuring you receive the right meds; finding a new doctor; attending a medical appointment with a friend; acting as someone else’s medical proxy; becoming a board-certified patient advocate; or working for a hospital or health care system in the role of a Patient Advocate. The list goes on, but all of it boils down to one thing: making sure every patient gets the best possible care. If you don’t know him already, I’m happy to introduce you to fellow Substack writer Chris B. And this is our conversation about how each of us unexpectedly became patient advocates and what that means to us.... https://chrisbwrites.substack.com/ https://whatsherproblem.substack.com/ https://chrisbwrites.substack.com/p/smile-through-it-a-caregivers-poem  This week’s questions: If you consider yourself a patient advocate, what was your journey to becoming one? If you don’t, then what does patient advocacy mean to you? 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

  6. Aug 14

    Chronic Illness is Holding the Remote Control

    Your story matters too! If you are a fellow patient, I invite you to use my personal referral link to join Pinpoint Patient Recruiting. Pinpoint connects patients and caregivers to meaningful research opportunities where your real experiences help shape the future of healthcare — and you're compensated for your time. The Chronic Illness Time Warp I’ve been thinking about the best way to explain my relationship to time and how chronic illness has affected it. A topic that has come up a lot in recent months, in various settings. But, at first, I struggled to articulate my viewpoint. I thought about how it causes time dysmorphia by bending, warping, and distorting my perception of time. I pondered the idea that time flies when you’re having fun but high school science class felt like it dragged on for hours (with apologies to those of you who liked high school science). I mused about how the best vacations are the ones when you lose track of the day and date. I considered that summers feel quick but winters feel long and that the older I get, the faster the years seem to pass. I even got “Let’s do the time warp agaaaaaiiiinnnn….” stuck in my head! But none of those concepts quite seemed to nail it. Then, it hit me. Chronic illness is like a remote control for my life; it is dictating the time and speed at which I experience everything, just as I do to my favorite series when I’m watching tv (and yes, I am a person who still watches a real television). No matter how much I try to steal that remote away from chronic illness, take back control, and change the channel, it holds on like the jerk of a couch potato it really is. When I thought about time through that lens, the effects of chronic illness became clearer: When Chronic Illness Presses STOP To me, the most obvious example of chronic illness pressing the STOP button on the remote control for my life is when I’ve been hospitalized. I’ve had a few lengthy hospital stints: 9 days for open-heart surgery in 2016, and 54 days at 3 different hospitals with my neuropathy in 2019. A few shorter stints of 1 to 3 nights have been sprinkled in as well, but it’s the longer stays I’m referring to as a full STOP here. In the hospital, time slows and becomes amorphous. Every morning, a nurse comes in and writes the day and date on a dry erase board because patients are unlikely to have that awareness otherwise. It feels like nothing exists outside the hospital, which has its own eco-system. A constant parade of doctors, nurses, and phlebotomists pass through on their own schedule, which has nothing to do with the waking and sleeping hours you would choose for yourself. It’s disorienting! You can’t go to work. You would be unlikely to leave of your own volition. Everything else around you has ceased. That’s definitely how I felt in 2019. The whole summer passed me by, while I just went through the same hospital routine day after day, inside a room without much natural light to help my circadian rhythm kick back in. Time basically stopped and became irrelevant. When Chronic Illness Presses PAUSE More often than not, my chronic illness remote control doesn’t hit the STOP button, saving that for only special occasions. Instead, it most frequently hits the PAUSE button. In a recent Note, one of my fellow chronic illness Substackers, You Don’t Look Sick, Ang, wrote: I think one of the hardest parts of chronic illness is that life doesn’t pause while you’re recovering. The laundry still exists. The emails still exist. The kids still need snacks. You just learn to keep moving a little differently. This really resonated with me. We may be on PAUSE, recovering from a flare, focusing on medical appointments, researching symptoms, and trying to rest, but the world is still going on around us, and we have to find ways to manage that disparity. When Chronic Illness Presses FAST FORWARD FAST FORWARD might be the scariest button on my chronic illness remote control. Before I had open-heart surgery, I was so symptomatic that it felt like everyone and everything around me was racing by in FAST FORWARD, but I couldn’t keep up. I was so terrified to have the surgery that I let it grind my life to a full STOP. I didn’t know if I would have more time. But once I survived the procedure, I had no plan for the time I gained afterwards. While I recovered, everyone and everything around me raced by in FAST FORWARD once again, until I could finally get back on track and catch up. When Chronic Illness Presses AHEAD 30 SECONDS Admittedly, the remote-control button to skip AHEAD 30 SECONDS is my favorite. It allows me to skip through commercials on recorded programs, thereby saving time. I actually wish my chronic illness remote control would push this button more. Could it help me skip over a moment of intense nerve pain to reach a moment of relief? Or skip past my next ICD (Implantable Cardioverter Defibrillator, which is both a pacemaker and a defibrillator) replacement surgery and go straight to recovery? I wouldn’t mind! A 30-second jump feels much more manageable and selective than a full FAST FORWARD, which allows time to escape quickly. When Chronic Illness Presses BACK 10 SECONDS While these last two buttons focused on the forward momentum of time, chronic illness is more commonly known for its backwards trajectory. The BACK 10 SECONDS button is like a minor setback. One bad day of symptoms. A single migraine, a day when I have shortness of breath, or one with intense nerve pain. Not a full regression, but rather a moment of discomfort that catches your attention and causes a brief time lapse. When Chronic Illness Presses REWIND The REWIND button, on the other hand, is chronic illness’ way of turning back time. Usually in the form of a bigger setback. For example, a few years ago, I thought I was making good progress transitioning from my walker to a cane, so I decided to go run an errand with just the cane. I had my small purse backpack on my back and the cane in my left hand, as I strode through the living room towards the garage to get in the car. But the grippy part of the sole of my shoe caught on the tile floor, and I tripped. Although I somehow prevented myself from falling, I landed on my left foot, bent in a way that I instantly knew something was wrong. Sure enough, I had broken both a toe and part of the metatarsal bone in the foot itself. The podiatrist put me into a walking boot and sent me straight back to the walker to ensure my balance. A REWIND indeed. When Chronic Illness Presses RECORD A moment is frozen in time when chronic illness presses the RECORD button. If we are willing to go back and look at the recording, it can offer us a new perspective. When I take a moment to reflect on the moments recorded and etched into my memory from throughout my time managing multiple chronic illnesses, it helps me find meaning. It also helps me to see the overall trajectory and not to focus as much on the individual moments, especially when they have been difficult. Above all, the saved moments help me to become a better person, learning and growing as a result. When Chronic Illness Presses PLAY PLAY is the mode in which we’re able to go about our daily business. It’s the average day with all the chronic illness effects managed as best they can be, alongside our regularly scheduled programming. But my PLAY mode now looks much different than it used to. A few months ago, in her Health Story Collaborative group “Writing for Expression and Connection,” Jen Crystal gave us this writing prompt: How has your relationship to time changed because of your illness? As you may remember, Jen and I spoke earlier this year for my Interview Series about her book, “One Tick Stopped the Clock.” Like the title suggests, she too experienced the stoppages, pauses, rewinds, and fast-forwards of the chronic illness remote control during her battle with Lyme Disease. When Jen posed this question, I was thinking about time as it used to relate to my workaholic tendencies. But I think my response to the prompt is evidence of how my standard PLAY mode has been altered in the face of chronic illness. Here is a lightly edited version of what I wrote: Before multiple chronic illnesses changed the trajectory of my career, I was a theatrical Stage Manager. In this coveted role as the point person on a play or musical, I had a multitude of responsibilities. But one of the most important was to keep rehearsals and performances on a tight time schedule. There is a phrase we used at the theatre where I worked the longest: ‘The Stage Manager’s watch is G-d,’ we would say. For example, if an actor thought they were on time but my watch said otherwise? They were late. If the show was supposed to start at 7 minutes after the hour, we started at exactly 7 minutes after the hour, according to my watch. And so, I prided myself on having the “right” watch for the job. It had to have the “right” face and the “right” numbers to see them in the dark lighting of the theatre. If it were to rule us all, it had to be worthy. Now, after a decade away from my life in the theatre, as I manage my health, I adhere to time less strictly. Don’t get me wrong. I’m still punctual. But I set the alarm less often. Don’t oversee anyone else’s time schedule. In fact, when I type on my laptop keyboard, the face of my watch rests on a magnet. The longer I type, the slower my watch becomes. Lagging behind by 3-5 minutes doesn’t worry me the way it would have in the past. I just re-set my watch every few days and move on. My, how times have changed. The thing is, with chronic illness in charge of the remote, I can’t change the channel. I can’t take the batteries out and start over. But I will keep finding new ways to manage how my perception of time is bent and adjusting to every press of a button. Each issue of “What’s Her Problem?” includes questions for fu

  7. Aug 7

    Upon Review, I am Still Disabled

    “We recently reviewed the evidence in your Social Security Disability claim and find that your disability is continuing.” I let out a huge sigh of relief when the letter containing those words arrived in the mail, and then the tears started flowing. I knew I was nervous to receive this determination, but I was still surprised by the magnitude of the release and the sense of a weight being lifted off my shoulders. In a March 19, 2026 letter from the Social Security Administration (SSA), which I received in early April, I was notified that my Social Security Disability Insurance (SSDI) benefits were about to undergo a “Continuing Disability Review.” I had been anticipating this review for a while, but still managed to feel a bit caught off guard.... This week’s questions: If you receive SSDI or other government benefits, have you undergone a review process? Was yours similar? What was the emotional component of it like for you? 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

  8. Jul 31

    Answering Reader Questions

    Thank you! Today, as I celebrate one year of writing “What’s Her Problem?,” those words feel insufficient to express my gratitude to each of you. Every person who has read an article, clicked a link, made a comment, given a like, interacted on Notes, and, especially, subscribed, has made this venture worthwhile. The goal has always been to use personal storytelling to advocate for and connect with others. I have two special surprises for Free Subscribers: * For the month of August only, I have removed the paywall from the two most recent episodes of the Interview Series! If you missed out on those conversations, this is your chance to catch up! * Dr. Wendie Trubow, MD on how Functional Medicine practitioners can help us mitigate the impact of toxins on our bodies. * Lyme Warrior Jennifer Crystal discussing chronic illness, writing to heal, and her book “One Tick Stopped the Clock.” * For this week only (7/31-8/6), I’m offering a 20% discount on annual subscriptions. That’s $48/year instead of the regular rate of $60. Even better? You will be locked in at that rate for all future annual renewals. If you’ve found my articles valuable, please support my work by upgrading to a paid subscription. I only plan to do a discount like this once a year, so now is your chance! In preparation for this 1st birthday, I asked you, the readers, to submit questions. I’ve selected four to respond to here. Thank you to everyone who participated... Links/References: Your Best Life Made Easy: Thriving After 50 https://whatsherproblem.substack.com/p/the-trouble-with-doors My top 8 Tips for Managing Chronic Illness and Mental Health. https://www.womenheart.org/about-us/become-a-womenheart-champion/ https://substack.com/@whatsherproblem/note/c-296492572?r=heamx&utm_source=notes-share-action&utm_medium=web https://youtu.be/uIxvUtWKwRo?si=j7H_6i8MbLvtxhAr https://whatsherproblem.substack.com/p/what-if-there-had-been-another-treatment?r=heamx https://4hcm.org/ https://womenheart.org/ https://whatsherproblem.substack.com/p/lets-discuss https://whatsherproblem.substack.com/archive This week’s question: Do you have any other questions for me? I will periodically be opening the “Ask Me Anything” inbox in an official way, but feel free to message me with questions any time, or drop them in the comments, and I’ll keep them for future reader-focused articles. 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

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About

“What’s Her Problem?” Podcast is the audio version of writer and patient advocate Debra Rafson's weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more! whatsherproblem.substack.com

Information

  • Creator
    Debra Rafson
  • Years Active
    2025 - 2026
  • Episodes
    56
  • Rating
    Clean
  • Copyright
    © Debra Rafson, The Open-Hearted Advocate LLC
  • Show Website
    "What's Her Problem?" Podcast