For those who suffer from a chronic illness, taking two aspirin and calling the doctor in the morning – or enduring painful treatments and taking prescription medication – seldom results in relief, much less healing. When someone suffers from an invisible malady, they may not “look sick,” which sets them up for questions from well-meaning people who do not understand their pain and for accusations from less well-intentioned ones who call them hypochondriacs. For many, getting well is not an option, so finding ways to live well with the lot they were dealt with becomes the goal.
Podcasting About Chronic Illness
Those with chronic illnesses may look to others with the same disease or with similar conditions for support and unite as “warriors” fighting an ongoing battle against the forces that ravage their lives. In this technological age, where nearly half the people in the world (and over 80% in the developed world) have internet access, those with chronic illnesses of all kinds may come together with other warriors on Facebook pages and groups, via blogs, and via YouTube and podcasts.
The exploding array of podcasts on chronic illness offers a forum to present and discuss information about the issues that result from these afflictions. As most podcasts, blogs, and Facebook postings are not written by doctors, the content may be largely based on the life experience of the host or guest. Common themes include how to manage work and relationships, sex, depression, childrearing, maintaining work-life balance, self-care, and more. While this list may sound no different than the topics you might hear on a number of podcasts or read about in blogs online, the difference is that navigating these areas of life is more difficult for also who also have chronic pain in the mix. The invisibility factor makes for being misunderstood, misjudged, and discriminated against, which can threaten one’s self-esteem and self-worth.
This list of podcasts will offer a very cursory overview of broadcasts about many types of chronic illnesses. In the future, watch for reviews of recommendations for one directed toward specific conditions.
1. Painiac Review
Painiac is a podcast devoted to “helping people live well even when it hurts.” Since healing invisible illness is not a likely option, pain management and reframing one’s relationship with the disease are crucial. The outside world may stigmatize those who claim to be ill; not being believed tends to result in isolation, depression, frustration, and loneliness. While chronic illness does not discriminate against age, race, sex, or location, many “painiacs” are young women who aren’t “expected” to be sick.
Chronic illness debilitates the body, makes daily life activities difficult and may impact mental health as well. Many ongoing conditions such as diabetes, asthma, arthritis, lupus, fibromyalgia, multiple sclerosis, or hundreds of other diseases may even have an auto-immune component wherein the body attacks itself, damages its own tissues, and is less able to fight off infections. Those with chronic issues may frequently suffer from colds, flu, and other “minor” illnesses as well; a crisis such as the coronavirus that preys with a vengeance on those with immune system issues causes major concern.
The host: A sufferer of chronic pain herself, mindfulness coach Shelly Jackson Buffington knows first-hand that doctors try to treat chronic illness with addictive painkillers that can leave you in a fog, while many support groups are downers that only concentrate on feeling better. Her goal is to maintain a podcast that leaves listeners feeling hopeful and empowered with new actions to improve their quality of life. With a soothing, lyrical voice, she encourages people to speak confidently to their doctor, while learning to manage expectation and work with their limitations while pursuing a fulfilling life.
The guests: While Shelly sometimes carries the podcast herself, her guests may include experts such as Dr. Beth Loy, Kira Lynne, or Dr. Rachna Patel. She often shares stories of other painiacs who learned to live well in spite of pain.
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Must Listen Episodes:
2. Spoonie Radio Review
Focusing on CFS (chronic fatigue syndrome) and fibromyalgia, Spoonie Radio is a venture offered by Dr. Courtney Craig, a recovered CFS patient who is currently a nutritionist, clinician, and visiting scientist at Cornell’s Center for Enervating Neuroimmune Disease. After much scientific reading and experimentation, she concluded that dietary changes were key to improved health. Her own success in reducing inflammation, improving intestinal health and metabolism, and boosting immune function for herself has led her to try her techniques on patients and discuss them in her blog and podcast.
The name “spoonie” is a metaphor for explaining the impact of chronic illness developed in a blog by Christine Miserandino about 10 years ago. Chronic illness leaves the afflicted with lessened physical and mental energy that they must carefully meter to make it through the day. Each day, a person starts out with a pile of 10 or 12 spoons, or units of energy, that they exchange when doing tasks. While someone without autoimmune disease and other chronic conditions might be able to handle a day of work, parenting, cleaning, and socializing with relative ease, a “spoonie” might use up half their spoons just getting up, showered, dressed, and fed.
Spoon theory can help a chronically ill person explain to others what they can do in a day and also is a tool for self-care to prevent them from overdoing it. It is frequently mentioned in podcasts and other vehicles as a way to manage pain and live the best possible life, and in fact, a cadre of “spoonie” or chronic illness influencers have risen up to unite the warriors and educate others.
The host: Dr. Craig has turned her personal and professional experience managing autoimmune diseases, chronic infections, thyroid insufficiency, and more into an intriguing podcast.
The guests: Though Dr. Craig has plenty to say, she invites researchers, clinicians, and advocates to present practical information about how to cope with and overcome invisible illness. Her guests such as Ken Lassesen, Jarred Younger, and Toni Bernhard may not be household names but they deliver a solid blend of research and advice about how to live well with chronic illness.
Listen to Spoonie Radio
Must Listen Episodes:
3. Invisible Not Broken Review
Speaking to people with chronic illness, invisible illness, disability, and chronic pain, Invisible Not Broken is a weekly podcast that merges the styles and concerns of the hosts under a call to action of “Be Kind. Be Gentle. Be A Bad Ass.” This podcast encourages listeners to live life with gusto despite unfathomable obstacles.
The Hosts: This podcast has three hosts who each have a laundry list of invisible illnesses and a slightly different approach to dealing with them. Monica Michelle, who owned a photography studio until her Fibromyalgia, Ehlers Danlos Type 3, POTs, and suspected MCA forced her to rethink the future advocates for the chronically ill and encourages the afflicted to support each other. She wants to “build tribes” with a passion often laced with four-letter words. Her segments are known as the Explicitly Sick Podcast.
Eva Lan Minkoof, the second host with fibromyalgia and many other illnesses herself, devotes her podcast episodes to interview practitioners who both have chronic illnesses and who treat patients with them. Her Wellacopia segments match listeners fine with the right local health professionals. She also influences Spoonie Influencers who advocate for different illnesses.
The third host, photographer and blogger Kyros Star is beset with serious food allergies as well as Morton’s Neuroma and Peripheral Neuropathy that affect his mobility. His mission it so to help people navigate life with invisible disabilities.
The guests. Interviews and panel discussions with professionals who are spoonie influencers are the mainstay of this show, which runs about 60 minutes. The lineup has included fellow podcaster Lauren Freeman, world traveler Phoebe Howlett, occupational therapist Kimberlia Lemon, Hollywood designer Bernardi Puccio, and many more. Anyone who listens to this podcast will better understand the dynamics of being disabled in an ableist world and marvel at the “life hacks” the guests have implemented to be successful.
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Don’t Miss Episodes
4. FUMS: Giving Multiple Sclerosis The Finger Review
The delightfully off-center and somewhat off-color podcast FUMS: Giving Multiple Sclerosis The Finger refers to the unpleasant reality that those who suffer from MS may have lesions on the brain known as Dawson’s finger. Hostess Kathy Reagan Young defines herself as an MS patient only as an afterthought to her other roles as “ wife to TJ who is a golf pro, a mom to 2 teenage daughters (and all the fun that comes with that), a friend, a writer, a marketer, a reader, a crabeater, a beer and wine drinker (occasionally a Jameson drinker), a singer/songwriter, and activist …” She proudly gives MS the finger every day with a hardy “FUMS!” and she invites her podcast listeners and blog followers to do the same.’
The Host: As host, Kathy Reagan Young aims to educate inspire, and motivate her audience who often suffer from the same pattern of symptoms, sudden outbreaks or flares, and indignities common to those with MS and many other chronic illnesses.
The Guests: Plenty entertaining on her own, Young interviews both medical professionals and fellow patients on her show, often finding an amusing take on serious issues that will inform both “chronics” who suffer from illnesses and “healthies” who do not of what’s involved with having MS and other auto-immune diseases.
Those new to the show might find the 50th Show episode, which features messages from past guests and listeners and Kathy’s reflections on the show, particularly helpful but every episode features a topic totally relevant to those with MS and to those “healthies” who want to be “woke” about the realities of chronic illness.
Must Listen Episodes:
5. This is Not What I Ordered Review
Though chronic illness can zap the joy out of life, those who suffer from it can still lead a joyful, fulfilled life despite health challenges. The This is Not What I Ordered podcast offers upbeat, humorous, honest conversations between the host who suffers from MS and guests who not only try to make it in spite of their disabilities but who live “epic lives.” Most people did not choose to be ill, yet that is what life has dealt them. They often feel alone as they figure out how to overcome struggles and live the best life they can.
The host: California psychotherapist Lauren Selfridge has found that her own health issues have led her to a deeper knowledge of herself. In starting the podcast, she sought to help listeners realize that they are not alone in their journey and that they have the wisdom to share with others. Calm and supportive, she makes everyone feel that everything and everyone will be all right.
The guests: In each episode, guests share their personal stories with Lauren who reinforces that the conditions they have in their bodies do not define them. Her mix of men and women guests reinforces that chronic illness is not just a female problem but can change anyone’s life. Her guests have included artist Ramon Shitta, grief counselor Melinda Laus, therapist and music editor Lily Sloane, and many more who have come to accept their health issues and moved on.
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6. Chronic Sex Review
While many great podcasts out there discuss important PG topics of how to manage work, symptoms, and daily life, Chronic Sex gets down and dirty about sex and other quality of life issues surrounding it, such as self-love, self-care, relationships, and sexuality. As their tagline says, “sexuality does not depend on ability.” In its third year, this podcast addresses this important topic so frankly and graphically that it comes with warnings about it being for those over 18 and suggests wearing headphones if listening to it at work.
It is one of the resources offered on a great website that includes links to numerous articles and websites that break down many very specific questions about sex that users might have. There is even extensive discussion about sex toys and where to procure ones that are safe and made from non-allergenic materials.
The Host: Afflicted with a growing list of chronic illnesses since childhood that currently stands at 20, Kirsten Shultz is a sex educator, writer, and activist who started a website called Not Standing Still’s Disease. After volunteering with several organizations, she realized how little discussion there was on sexuality and disability. As a trans woman with an interesting journey of her own, she knows firsthand that disabilities and illnesses can be a hurdle in relationships with oneself and with others. She has a passion for working with those recently diagnosed with chronic illness to help them re-find all of themselves as they readjust to life. Her advocacy for others includes activism.
The Guests: Many of Kirsten’s podcasts list guests, but she often carries the session by herself. Some guests have included Kait Scalisi, Dr. Lee Phillips, Dr. Ginevra Liptan, and many people just identified by their first name. Since she has sound academic credentials in addition to life experience, she infuses her podcast with research.
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Must Listen Episodes:
7. Get Well Soon Review
Many chronically ill people hate it when well-wishers say “Get well soon!”, which they interpret as insensitivity to the reality that they may never experience “good” health. Dr. Meg Haworth in her Get Well Soon podcast advocates for natural health and healing through nutrition. As with many who suffer from Chronic Illness, Dr. Meg suffered from physical, emotional, and sexual abuse as a child which led to fibromyalgia, IBS, and 10 more illnesses. Unlike most, she also suffered the traumas of being struck by lightning and nearly drowning. In her mid-twenties, she realized the connection between trauma and illness, which set her on a new path where she took control of healing and saw dramatic changes in her health.
The host: Aside from offering her Whole-Person Integration Technique to clients to help them see the mind-body connection, Dr. Meg is a former cooking instructor for Whole Foods Markets, private chef to the stars in Hollywood, and author of eight books. She has been featured on NBC Nightly News, The Huffington Post, The Los Angeles Times, and on many online summits and podcasts. Her experiences, intuitive gifts, and doctoral education in Transpersonal Psychology & Holistic Wellness for Abuse Survivors have made her an advocate for abused women and others with difficult-to-process past experiences.
The guests: Dr. Meg Haworth attracts a powerhouse of interesting guests, such as Dr. Debi Silber, Lori Hart, Amy Marcs, and many more. Although she and her guests have impressive credentials, the podcast conversations are friendly, relatable, and totally addictive. Regardless of their specific background, everyone can benefit from her emphasizing the connections between mind and body.
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Must Listen Episodes:
8. Sickboy Podcast Review
Think chronic illness podcasts are mainly the domain of women? The Sickboy Podcast presented by three 30-ish young men aims to crush the stigma of chronic illness and disease. One the three, Canadian actor Jeremie Saunders had cystic fibrosis (CF) from childhood, and his two friends Brian Stever and Taylor Macgillivary started the podcast to show the power of laughter in dealing with illness. The trio does not mock illness but presents serious issues with adult humor liberally punctuated by the F-word, Given the current preoccupation with the coronavirus, many current weekly broadcasts touch on this subject.
The hosts: Only one host has a chronic illness, but Jeremie’s CF is seldom the subject of discussion. The hosts as a group promote sensitivity to the issues of the critically ill with the same irreverence that they treat most issues.
The guests: While the podcast hosts guests who join the conversation, the podcast is conversational but diverse, filled with interesting tidbits of current news. On the first Must-Listen Episode listed below, they chatted with an ICU nurse, Ryan, and pulled in snippets from YouTube with Tracey Morgan on being quarantined and with a woman who tried to put a home-made mask on her elderly fatherly. Guests have included immunologist Dr. Dawn Buddish, Maia Vezina, and paralympic swimmer Andrew Haley
Listen to Sickboy Podcast
Must Listen Podcasts
The podcasts reviewed here are but a fraction of the hundreds of chronic illness podcasts available to interested listeners in search of support.
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