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Tag: chronic illness

  • Kennedy, RealFood.gov misrepresents chronic health spending

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    Have you seen the Mike Tyson ad telling people to eat “real food?” The black-and-white spot that debuted during the Super Bowl is the latest promotion for the federal government’s new dietary guidelines. 

    With a quick scroll, football watchers who visited the website in the ad would have encountered the statistic that “90% of U.S. healthcare spending goes to treating chronic disease — much of which is linked to diet and lifestyle.” 

    This statistic also appeared in the dietary guidelines and on the CDC’s website. Health and Human Services Secretary Robert F. Kennedy Jr. said it this way in his Jan. 7 announcement: “The CDC reports that 90% of healthcare spending treats chronic disease.” 

    This number grabbed podcaster Michael Hobbes’ attention. “I couldn’t find anyone fact-checking this number,” Hobbes said on the Jan. 30 episode of “Maintenance Phase,” a podcast that digs into the science behind health and wellness trends.

    No worries — PolitiFact is here to answer the call! 

    The 90% figure has roots in a 2017 report by the Rand Corp., a nonpartisan research organization. But one of the researchers told PolitiFact that the claim, as stated by Kennedy and RealFood.gov, didn’t accurately reflect their findings. 

    The Rand report calculated all health spending on people with chronic illnesses, which includes a majority of Americans. It did not isolate the total spending on treating chronic illness itself.

    Here’s another way to think about it: If someone with asthma broke a leg, got glasses or picked up antibiotics, that all counted as spending on a person with a chronic disease — even if it’s not treating the asthma. 

    The department did not respond to our request for comment. HHS relayed the research more accurately in the dietary guidelines document and CDC website. 

    What the report really said

    A trail of footnotes in the dietary guidelines leads to the 2017 Rand report.

    Rand used data from an annual government-run survey. The Medical Expenditure Panel Survey asks families to report a year’s worth of personal health care use and spending — including doctor’s visits, prescriptions and hospital stays. It also collects data on people’s health conditions, which can be categorized as chronic or not chronic.

    The sample size has varied over the years, ranging from about 18,000 to 37,000 people. Experts said it is among the best data sources on personal health spending. 

    The report defines a chronic condition as a mental or physical health condition lasting over a year that either requires functional restrictions or ongoing medical treatment. Many conditions fall into this category, including hypertension, diabetes, depression, anxiety, osteoarthritis, asthma, heart disease, high cholesterol, and cancer. 

    Using survey data collected in 2014, Rand researchers estimated almost 60% of Americans had at least one chronic condition. 

    Then they looked at people’s health care costs, including payments made by insurers and out-of-pocket costs. 

    According to Rand, spending on the 60% of people with one or more chronic conditions made up 90% of all spending. The 40% with no chronic illnesses made up 10% of the spending. 

    “A person in a year spends or incurs health care costs for multiple related things,” said Christine Buttorff, a Rand health policy researcher and study co-author. “It could be their chronic disease, but it also could be something as simple as an acute illness where they had to go to the doctor or go to the emergency room for something totally unrelated to the chronic disease. So our estimates lump all of that together.” 

    The claim that 90% of U.S. health care spending goes to treating chronic disease is “not an accurate reflection of our report,” Buttorff said. 

    Limited data on chronic illness treatment spending

    Estimating how much Americans spend on treating chronic illness is harder. It typically requires using insurance claims data, which is spread across government databases and private insurers. 

    It can be difficult to link expenses and conditions. If, for example, a person with asthma is hospitalized with pneumonia, is that part of their chronic disease treatment or an acute case? If a person pays to see a psychiatrist but has both anxiety and depression, which diagnosis is that cost linked to? 

    University of Washington researchers have been tackling this question. The university’s Institute for Health Metrics and Evaluation in 2025 analyzed personal health care spending from 2010 to 2019 on 148 health conditions, without distinguishing chronic illnesses from other ailments. 

    In 2019, the top three most expensive conditions were Type 2 diabetes ($143.9 billion), musculoskeletal disorders such as joint pain and osteoporosis ($108.6 billion), and oral disorders such as cavities and orthodontia ($93 billion). 

    “Reality is, we spend a ton of money on things that people don’t associate with chronic diseases,” said Joseph L. Dieleman, a University of Washington health metrics sciences professor and study co-author.

    PolitiFact did not find any studies since 2018 that looked specifically at past chronic disease treatment spending. 

    One recent report tried to model future spending on chronic disease. A 2025 report from GlobalData and the Partnership to Fight Chronic Disease estimated an average of $2.2 trillion annually in medical costs over the next 15 years. 

    Given that current health care spending is over $5.3 trillion annually, that rate of spending would put chronic disease spending around 42% annually. 

    Rising chronic illness burden is not all related to diet and lifestyle

    U.S. chronic illness rates are rising.

    In 2010, about 50% of Americans had at least one chronic condition. The number has climbed closer to 75% in recent years, boosted in part by better diagnostics and longer lifespans. 

    “Chronic conditions linked to lifestyle choices such as physical inactivity or diet are a huge issue in the U.S., even if their use of this statistic isn’t quite right,” Buttorff said. 

    Several of the most common chronic conditions — hypertension, Type 2 diabetes, heart disease, and high cholesterol — have been linked to diet and lifestyle related risk factors. 

    Others can’t always be linked to lifestyle, including mental health conditions, asthma, Type 1 diabetes, cancer, rheumatoid arthritis, Alzheimer’s disease, and dementia.

    Our ruling

    Kennedy and his department said that 90% of health care spending is for treating chronic disease.

    The statistic is based on all health spending on people with chronic diseases, not spending on treatment itself. 

    A majority of Americans have chronic illnesses, so it’s likely the real number is high. We were unable to find a reliable report that isolated chronic illness spending in the past few years, but a predictive report estimated it could be around 2.2 trillion annually, which would be less than half of current health spending. HHS did not provide evidence to support the claim about treatment spending. 

    We rate this statement False. 

    Staff Researcher Caryn Baird contributed to this report

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  • Finding Meaning in Virtual Worlds: How Online Gaming and Digital Communities Can Transform Lives

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    Virtual worlds and online gaming have become a new source of meaning, purpose, and belonging in today’s world, especially for those who struggle with loneliness, social anxiety, or physical disabilities. The new documentary The Remarkable Life of Ibelin shares the inspiring story of Mats Steen, a young Norwegian man with Duchenne muscular dystrophy, who built a meaningful life through the popular game World of Warcraft.

    The digital world is sometimes criticized for being a “shallow escape” from real life. However, for many it can be a reliable source of meaning, connection, and purpose—especially for those who may find it difficult to fulfill certain needs and values in their regular daily lives.

    The Remarkable Life of Ibelin

    The 2024 documentary The Remarkable Life of Ibelin is an insightful and heartfelt story on how people find real meaning, connection, and purpose through online gaming and virtual worlds.

    Mats Steen, a young Norwegian man living with Duchenne muscular dystrophy, found freedom and fulfillment through his digital persona, Ibelin, in the popular video game World of Warcraft. Mats’ physical limitations were significant, but in Azeroth, he experienced life without barriers.

    His parents only discovered the extent of his online relationships after his death, realizing that the world they thought was isolating had actually given Mats purpose and belonging. For eight years, Mats was an active member of the Starlight community, a guild within World of Warcraft that became like a family to him. Every evening, Mats would log in to talk, roleplay, and have fun with dozens of online friends. Throughout those years, he dedicated over 20,000 hours to the game and participated in conversations that filled more than 42,000 pages of chat logs.

    The documentary used these chat logs to recreate Ibelin’s life within the game, including sentimental and meaningful moments with his online friends Rumour and Reike. Viewers get to witness, through these virtual interactions, how Mats / Ibelin found a place where he was valued not for his physical abilities, but for his personality, humor, and kindness.

    Through this digital world, Mats was able to find a sense of purpose and belonging. As he says in the documentary, “Games are my sanctuary. I am safe here, feel valued and respected.”

    Finding Love and Romantic Fulfillment in Virtual Space

    Due to his physical condition, Mats struggled to find love and romance at school or among real life friends. However, through his virtual avatar Ibelin in the game, Mats was able to experience rare moments of romantic connection that he never thought possible. For once, he was able to connect with people just based on who they are on the inside; as Mats observed, “Everyone looks good in this world, so looks don’t matter, it’s about personality.”

    In World of Warcraft, Mats formed a romantic bond with a player known as Rumour. Their connection began with playful moments, like when Rumour stole his hat “just to see what happens,” and gradually grew into a deeper and more significant connection over time. One of the most memorable moments was their virtual kiss, which Mats described as, “The closest thing I’ve ever been to a crush my entire life.” Mats would give her digital gifts and flowers, and she reciprocated by drawing a real-life picture of their characters embracing—a gift Mats would hang in his room.

    Real-World Emotional Bonds

    These digital connections often spilled over into real lives and deep emotional bonds.

    One day, Rumour mysteriously disappeared from the game and stopped playing. Mats only later found out that her parents had taken her computer away due to her poor grades. This sudden disconnect deeply affected Rumour, whose real name was Lisette, and she began struggling with depression because she could no longer connect with her online friends. Mats, finding out about her pain, wrote a heartfelt letter to her parents, pleading with them to return her computer and emphasizing the value of the relationships she had formed in the digital world. His support helped Lisette during one of the most challenging periods she faced, showing how genuine and meaningful digital bonds can be, even outside of virtual spaces.

    Another one of his gaming friends, Xenia, known as Reike in the game, struggled to connect with her autistic son. Mats encouraged her to try gaming as a way to bridge the gap, and through World of Warcraft, Xenia was able to find new ways to communicate and bond with her son, including giving each other “virtual hugs,” which was a big deal because her son struggled with human touch in the real world. Xenia also said that her son could now share things with her that he normally couldn’t in person or face-to-face, improving their overall ability to communicate and connect through the shared experience of video games. 

    These are just a couple examples of how Mats’ digital relationships had significant, positive effects on the real lives of those around him, illustrating the powerful potential of online communities to bring about meaningful change.

    Opening Up About His Condition

    Mats took a long time to open up about his physical condition to the other members of Starlight. Feeling completely protected behind his virtual persona, Mats could ignore his material reality and didn’t have to worry about people showing him superficial pity or sympathy because of his illness. 

    This hesitation to open up and be vulnerable unfortunately led to some missed opportunities, including missed phone calls and video chats with his online friends. And during a real-life meetup and party for all the members of Starlight, Mats ended up being one of the few to not attend.

    Despite his fears of vulnerability, Mats eventually found the courage to open up as his illness progressed. He shared his fears of dying without meaning anything to anyone with Reike/Xenia, who reminded him of the profound impact he had made on her life and her son’s life. She then listed all the other people he had positively influenced, proving just how meaningful his presence had been over the years.

    Ibelin’s Funeral and Legacy

    After Mats’ death, the emotional weight of his digital connections became evident. When his parents announced his death on his blog, there was an outpouring of emails filled with love, sympathy, and support for Mats / Ibelin and his family. One email read, “What mattered to Mats was being able to spread joy in our lives. And stuff I learned from his example has changed the way I think about life. I hope that wherever he is, he knows that he’s remembered and treasured, and smiling right now.” Five of his online friends from multiple different countries attended his funeral, showing how deeply these connections extended outside of the virtual world. The Starlight community also organized their own virtual funeral for Ibelin, which has now become an annual tradition to honor his memory.

    Studies Supporting the Value of Online Gaming

    A well-known study (PDF) by Nick Yee (2006) identified three primary motivations for playing MMORPGs (Massively Multiplayer Online Role-Playing Games), such as World of Warcraft. Each of these motivations can be seen in Mats’ experience as Ibelin:

    • Achievement: The drive to accomplish goals, gain recognition, and feel a sense of success. Mats fulfilled important roles within the game, like his ‘investigator job,’ which gave him a sense of duty and made him feel valued and respected as a member of the Starlight team.
    • Social Interaction: The desire to connect, build relationships, and be part of a community. Mats was an active member of the Starlight community, where he built meaningful friendships both online and offline, including his connections with Reike (Xenia) and Rumour (Lisette).
    • Immersion: The desire to lose oneself in a fantasy world and experience life through a completely new perspective. Mats immersed himself in his avatar Ibelin and the virtual world of Azeroth, finding freedom from his chronic illness and experiencing life in a way that was uniquely empowering and uplifting. 

    In another related study published in Cyberpsychology, Behavior, and Social Networking, researchers found that players often experience deep social connections within their gaming communities which can help alleviate feelings of loneliness and isolation, especially for those who struggle with social anxiety or shyness. And a study in Computers in Human Behavior indicated that the collaborative nature of online games encourages many pro-social attributes such as improved communication, trust, and shared purpose.

    All of these elements are evident in Mats’ story, where his participation in the Starlight community gave him a valued role within a group and elevated his sense of identity and self-worth – all of which are important pillars in building a meaningful life. For individuals facing challenges like physical disabilities or social anxiety, online games can provide an accessible way to fulfill essential psychological needs that may be harder to meet in the physical world.

    Feeling Like You Made a Difference Somewhere

    One of the most meaningful aspects of Mats’ journey as Ibelin was his desire to make a difference in the lives of others. Despite his fears of dying without leaving a mark, Mats’ impact was undeniable. Through his friendships with Rumour, Reike, and others, he provided emotional support, created lasting memories, and changed lives for the better. His story reminds us that feeling like we have made a difference — whether in the physical or digital world —is a fundamental human need that gives life purpose.

    The annual virtual memorials held by the Starlight community, the heartfelt emails his parents received, and the international attendance at his funeral are all powerful symbols of the difference Mats made. His story shows that creating a positive impact on others isn’t just about physical presence, but ultimately the energy you give to others.

    Conclusion

    The Remarkable Life of Ibelin invites us to reconsider how we view digital spaces and the potential they hold for providing meaning, connection, and purpose. The emotional weight of Mats’ story moved me deeply—I’ll admit that by the end of the documentary I was tearing up a little bit, but that shows how powerful “just digital” relationships can be and how inseparable they are from our broader reality. For Mats Steen, World of Warcraft was more than just a game—it was a lifeline, a place where he could be a stronger and more confident version of himself, find love and romantic connection, and support his friends in a real and tangible way. His story is a powerful reminder that behind every avatar is a real person, and that the connections we form online can be just as enriching and life-changing as those we form in the physical world.  

    If you’re looking for more insightful documentaries, check out my recommended list of documentaries here.



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    Steven Handel

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  • Balancing the Good With the Bad

    Balancing the Good With the Bad

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    By Stefani Shea-Akers, as told to Keri Wiginton

    In 2013, when I was an English professor at a community college, teaching became difficult. I struggled to speak during class. I had some general weakness and trouble breathing. I had to drive between classes because I could no longer walk between them.

    I told a nurse practitioner about my mobility issues, but she brushed me off. I was probably imagining things, she told me. But I knew these symptoms weren’t normal. Most 32-year-olds don’t need a cane, walker, or wheelchair to get around.

    My “imaginary” problems progressed quickly. And the following year, after a lot more tests, a doctor diagnosed me with myasthenia gravis (MG).  

    The Good and Bad of Life After MG

    I was a bit of a workaholic in my former life. Things are completely different now. I had to stop teaching because my symptoms are so serious. I’m 40 now, but I lost my academic career in my 30s.

    MG also took much of my independence and some of my hobbies. I used to write my own songs. But I can’t sing them anymore. Losing all that, and more, has been devastating.

    Yet I’ve learned a deep lesson of gratitude. I find joy wherever I can. I know I never would’ve done that if I didn’t have this disease.

    Now I try to savor moments every day. Sometimes I sit in my yard, just watching the birds and leaves. It’s a good form of mindfulness. I started painting again — I never had spare time for my art when I worked a lot.

    And I still love music. I play the piano and keep up my vinyl collection.

    Plus, I tap into my research and writing background. I use those skills to raise awareness about MG and share stories about my journey through chronic illness.

    I also have postural orthostatic tachycardia syndrome, or POTS, an autonomic nervous system disorder. And I advocate online for the dysautonomia, MG, and rare disease communities.

    How Do I Have Fun?

    I’ll save my energy to play the piano, paint, or do something creative. Sometimes my husband and I will go for walks outside, and I’ll use my power chair. And like everyone else, I enjoy spending time with friends and family.

    When I have to do something overwhelming — I have a lot of medical appointments, tests, and infusions — I plan a reward for myself after. It’s a lot easier to get through the hard parts of my illness when I have something to look forward to.

    My reward can be something small, like watching a movie, buying a new album from a favorite artist, or eating something I enjoy. I’m a chocolate lover. But when I have to travel for appointments, my husband and I will plan what take-out food we’ll get. That makes it feel a little more fun.

    What Treatments Help My MG Symptoms?

    I take meds throughout the day, including an immunosuppressant. I also get IVIg infusions every week, a treatment that affects my antibodies in a way that helps my immune system.

    Every day I use a BiPap (bilevel positive airway pressure) machine to help me breathe.

    I also had a thymectomy in early September. That’s a surgery to remove the thymus gland. This procedure may help ease symptoms for some people with MG. It’s not right for everyone, but my doctor and I decided it’s my best chance for long-term improvement.

    When I’m not recovering from surgery, I try to stay active and build up my strength. Right now, I’m working on walking longer distances. I do short walks inside my house or outdoors nearly every day. I also stretch regularly, which helps manage some of my chronic pain from injuries.

    What Are My Other Strategies to Manage MG?

    I follow a pretty strict routine each day. I try to eat my meals at the same time. That helps me stay on track with my treatment schedule — it’s essential to take my medication and infusion at the right time.

    If I have to make a call, I’ll schedule it in the morning and plan to rest afterward. But I have to be careful about how much I speak. Talking, especially on the phone, can make my weakness worse very fast. Respiratory problems are a big issue for me.

    Sometimes I can’t fully recover if I push myself too hard. So it’s second nature for me to take breaks throughout the day. But it’s not possible to avoid my triggers all the time. That includes stress and overexertion.

    I’ll go into survival mode when I feel like I’m on the verge of a serious flare. I do what I call “militant” resting — I seriously limit how much I speak and move. I’ll stay on my BiPap. I may have to get my IVIg infusion earlier than usual to avoid a hospitalization.

    How Do I Get Support?

    My husband is my caregiver and has been for the last 6 years. He helps me with lots of things. I haven’t been able to drive in many years, so I often rely on him to go places. And he does all the cooking and a vast majority of the cleaning.

    But he has a full-time job, and I know he gets tired. We try to make sure he gets breaks, too.

    I’m also grateful for my family and friends who offer their support.

    I’d never heard of MG when I was diagnosed. And I’m guessing most other people haven’t either. It brings me joy when someone tells me they’ve researched my condition or treatment. I know it means they’ll have a better understanding of what my life is really like.  

    You have MG. Now What?

    A rare disease diagnosis can be the beginning of a new life. It’s OK to grieve what you’ve lost. But prepare yourself for the changes ahead. How will you accomplish everyday tasks? How will you manage your schedule?

    It’s important to pace yourself. Plan for appointments and treatments. Schedule some recovery time after each task.

    You may have to reframe how you think about rest. You aren’t being lazy. Breaks aren’t wasted time. Your body and mind need them, especially if you want to avoid flares.

    Chronic illness can feel like a marathon. There may not be a finish line, and you may not be able to make it through the way you did before. But give yourself time and space to adapt to your new body and life. 

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