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  • Chronic pain patients reveal hidden truths to a future doctor

    What one med student learned about chronic pain treatment from hundreds of honest, unfiltered responses on Reddit—and why it should change how we train physicians.

    Learning about chronic pain is a depressingly low priority for US medical schools, despite the fact that pain is the number one reason that Americans access the health care system and the leading cause of long-term disability in the US.1 But as patient advocate (and my coworker at U.S. Pain Foundation!) Cindy Steinberg said recently at the 2025 American Academy of Pain Medicine conference, primary care doctors get less than 11 hours of education on pain throughout the entirety of their schooling. Vets– like for your dog– get triple or quadruple that.2 And pain medicine specialists? Chronic pain patients have them outnumbered nearly9000:1.3 Good luck.

    Those of us with chronic pain often stay quiet or shrink our issues. We’ve all had to get very good at toeing an invisible line, fearing dismissal, stigma and judgment. That’s why I was excited recently to participate in a discussion online where a med student asked Reddit’s chronic pain community “What do you need me to know about chronic pain?”

    I’m not sure if they were expecting the absolute flood of emotional, unfiltered, and eye-opening responses that followed. (As they later said, what they learned about chronic pain from Reddit “was a more authentic and raw exposure than what I received in medical school,” where their education on chronic pain didn’t include hearing or interact with any pain patients. ) But online is where the filters come off. It was a rare chance to speak directly to someone who was actually listening—and eager to learn.

    white woman in orange sweater against pink background holds both hands to her head as if her head hurt

    Our overwhelming message? Please, just believe us.

    But I wanted to hear both sides! So I reached out to the original poster, a current med student, to ask for their perspective Let’s dive into why they asked the question, the responses they recieved, and what they learned about chronic pain care. At the very least, they said, “I think this experience has opened me up to wanting to listen more to my patients with curiosity, without dismissiveness.”

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  • Chronic Pain Pillows: Your Ultimate Guide to Every Type

    Chronic pain pillows that quickly reduce your pain while helping you sleep

    Chronic pain pillows are a crucial part of life when it comes to managing the pain of an illness, injury, chronic condition or disability. It’s hard to overstate the effect that the right combo of pillows can have: not just on easing your chronic pain and improving sleep quality (the two are deeply intertwined), but by promoting healing and overall health.

    The correct pillow setup will help by improving your posture during the day, offering specialized support for your particular needs, and leading to less pain in the future.

    So toss those old, lumpy bed pillows and investigate the wide world of specialized pillows for chronic pain that are designed with ergonomic shapes and specific therapeutic purposes. Of course, we have to talk about what your pillow could be made out of, so I put together a description and pro / con for each type of material. Read on to find the right pillow for your chronic pain or health problem!

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  • Top 7 Gifts To Make Chronic Pain Easier

    Gifts to make life with chronic pain easier, more productive, and less painful

    Finding the perfect gift for someone with chronic pain requires understanding both their daily challenges and their desire for independence. This curated guide highlights seven categories of gifts that genuinely improve quality of life: pillows, stretching tools, massage tools, heat and cold therapy, adaptive cleaning tools, personal pain management accessories and, most importantly, the gift of time & help. No matter who’s on your list or what conditions cause their chronic pain, there’s something in this gift guide that will help.

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  • “Renegades”: The PBS Show About Historical Figures With Disabilities You Need to See

    scrapbook-style image promoting the documentary series "renegades" with "historical figures with disabilities" in large text, features a vintage photo shows a Black man in a '70s suit speaking into a microphone with a street scene behind him, Brad Lomax_Artwork by Adriano Botega Inspiration Films

    I’ve been in constant pain since my teens and for so long, I have felt doubly unseen and unheard in the larger narrative of history and culture. So when I got the opportunity recently to interview the host & crew of Renegades, the groundbreaking PBS show about lesser-known historical figures with disabilities in American history, I was thrilled. Finally, a show that doesn’t just tokenize disability but centers it, celebrates it, and demands that we recognize it as integral to our shared history.

    “Disability has always been part of the U.S. historical landscape: it’s one of the few identities anyone can acquire at any time. This series is about putting disability back into the mainstream narrative, where it’s always belonged.”

    –Charlotte Mangin, series executive producer
    On a purple background, an old-timey TV with rabbit ears has text appearing reading "what star trek got wrong about geordi's disabilities, janetjay.com"
    At least there was Star Trek, problematic though it can occasionally be

    At base, Renegades tells the stories of extraordinary individuals who shaped the world in ways I’d never known. These are the stories I wish I had growing up, stories that validate the truth that disability isn’t a limitation: it’s part of the fabric of humanity.

    The importance of shows like Renegades, both in front of and behind the camera

    Each of these trailblazers hails from a different field and deals with a different disability, but they are connected by their stories, successes and demands to be heard.

    “We want this series to leave you inspired, maybe even a little mad – just enough to make you want to do something about it,” said Cashmere Jasmine, director and producer of the Celestine Tate Harrington episode. “These stories are American stories, not just for the disability community. It’s time they were recognized as part of our shared history.”

    What’s more, the series comes from a host, producer, production team and other media pros that have disabilities themselves, bringing unique and invaluable perspectives to the issue. In every way, Renegades centers on how best to tell the stories of each of these little-known historical figure with disabilities– and how to make those stories more widely accessible to those with and without disabilities.

    “Disability has always been part of the U.S. historical landscape: it’s one of the few identities anyone can acquire at any time,” said Charlotte Mangin, executive producer of the series. (That’s a line I use often, actually. Disability: it’s the only minority you can join!) She finished: “This series is about putting disability back into the mainstream narrative, where it’s always belonged.”

    Check out the preview below! Then scroll down for more about the show, the featured historical figures with disabilities, and the people with disabilities involved in making the show, both in front of and behind the camera.

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    Beyond the Pain Scale: A Patient’s Guide to How Nurses Can Improve Pain Management & Combat Stigma

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    Last weekend (October 2024) I had the incredible opportunity to speak at the 2024 American Society of Pain Medicine Nursing conference about the importance of communication between patients and their medical providers. I’m no medical pro, but as a chronic pain patient for over two decades, I’ve experienced firsthand the transformative power of compassionate, patient-centered nursing care and how much nurses can improve pain management treatment. I’ve also felt the weight of stigma, disbelief and “not my problem” that too often accompanies a chronic pain diagnosis.

    Don’t worry, I won’t inflict the whole hour-long Q&A on you. But here’s a little bit about what I’ve gone through, what I’ve learned, and some guidance on how nurses and other medical professionals can improve pain management, making a profound difference in the lives of patients with chronic pain.

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    Can you see pain?

    illustration of six people in pain, holding various parts of their body with a red circle around the area to indicate pain, text reads "can you see pain? janetjay.com" Image via freepic

    Different ways to see pain, even when your condition is invisible

    Can you see pain?

    It’s a tricky question! Pain is such a complex and subjective experience, and the word “pain” covers a whole host of very different experiences. It gets even more complicated when you’re talking about chronic pain or illness. It’s not like a bruise or a broken bone that you can easily point to and say, “Yep, that’s where and why it hurts!”

    That doesn’t make the pain any less real, though.

    Pain doesn’t always present itself visibly, and some individuals may mask their discomfort due to social expectations or personal stoicism. This is where other perspectives become crucial in developing a fuller understanding of how to see pain.

    Let’s look at the different ways to see not just acute pain but chronic pain, invisible disabilities or even mental health struggles. You can see pain through a person’s actions and affect, by representing that pain in art, or by using technology to visualize what’s happening to a body in pain.

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  • The Best Type of Heat To Help You Feel Better

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    Types of heat & how each helps pain differently

    Living with chronic pain can feel like an endless battle, but sometimes, the simplest solutions can offer the most profound relief. Heat therapy may be a time-honored tradition in pain management, but your options have evolved far beyond the humble hot water bottle. Let’s look at each type of heat and how it might or might not help your pain condition.

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  • Migraine Relief W/o Meds: A Huge List of Stuff to Help Your Headache

    on a grey background surrounded by clipart of books, pens, coffee, hearts, stars, etc, "migraine relief without meds: a huge life of stuff that helps headaches, janetjay.com"

    The ultimate guide to stuff that might make migraines more manageable

    Stuff to help your migraine… that you can get over the counter?! Yeeeah, seems like a “I’ll believe it when I see(/feel) it” situation. For my entire life I’ve dealt with migraine disease, tension headaches, and sinus headaches so bad I had one surgery and need another. I have tried nearly every treatment or thing there is to help my migraines and other headaches, and I will admit, most of what I’ve tried didn’t do jack shit. (Other than deplete my wallet.)

    On a light blue background, "so much more than a headache" with a clipart of a head with a brain and a red arrow pointing to the brain, speech bubble says "what's your migraine routine?" janetjay.com
    Check out my migraine routine!

    Despite the slog, I have figured out a few things that work for me (like my ever-evolving migraine routine!) and I wanted to put together a master list of items that might make you feel better. I asked my network, my private pain group and my and social media followers what they rely on. Then I used an AI to drill through over a decade of forum posts to see what’s been recommended over and over again.

    It’s a big list and not everything is going to work for everyone. But migraines are miserable, and the worse the pain, the more it seems worthwhile to try everything you can.

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    Exactly what to say to your doctor to get refills on the meds you need

    a question mark made of of red, white and yellow pills next to text "exactly what to say to your doctor to get an urgent refill on the meds you need, janetjay.com"

    Free step-by-step instructions with the exact wording to communicate with your doctor & get an urgent refill ASAP

    This post has been updated, most recently on 4/12/25.

    So you need to get an urgent refill on your pain pills, brain pills or another controlled med ASAP. How do you make your doc understand & act? How do you play middleman with your pharmacy? How do you keep track of it all? And exactly what do you say to make this magic happen?!?! Don’t worry! This post explains your options for how to get that urgent refill. I’ll even throw in a printable script (no, not THAT kind of script) with effective voicemail messages for your medical team that you can customize with your own info.

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    Poems about mental health & chronic pain– & despite them!

    On a brown background of scribbles and a scrapbook aesthetic, text reads "for national mental health month, 6 beautiful poems about mental health & poems about chronic pain, janetjay.com"

    Poems about mental health & chronic pain that are wise, not sappy

    This post has been updated on 4/?/25.

    Poems about mental health, chronic pain or other invisible disabilities, just like quotes on the subject, tend to be sappy as hell (except those quote pages I put together, of course). And that is extremely not my jam. But something doesn’t have to be about a specific condition to touch a chord re: the boredom, the fight, the loneliness… the whole slog of it all.

    Instead of writing a whole new post with my favorite poems of 2025, I’m going to make this a home for poems about chronic pain and mental health.

    Click here to read my choices for last year‘s National Mental Health Month. But now, here are my all time favorite poems I’ve read since / in 2025 are…

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    Is your room causing your insomnia? W/ a free printable to find out!

    Image of a woman wearing a pink sleep mask hugging a big white pillow, text reads "is your room contributing to your insomnia? How to identify the top causes of your insonia... and avoid them! Free sleep Qs printable. Janetjay.com"

    Using your five senses to figure out if your room is causing your sleeplessness

    text reads: Chronic pain sleep cycle: condition or surgery causes pain, trouble getting/staying asleep, delays healing, causing more pain, increased difficulty sleeping, janetjay.com" over a cipart of a girl holding her back, Image by mamewmy on Freepik

    If you’re someone who beds down at night only to stare at the wall, have you ever considered whether your room could be contributing to your insomnia? Not being able to sleep sucks, and the combo of chronic pain and insomnia (or fibromyalgia and insomnia, or ADHD and insomnia…) is even worse. The pain cycle (see infographic!) is a hell of a companion to drag along: the more you hurt, the less you sleep, which makes you hurt more, which makes you sleep less. Rinse & repeat.

    But you have options! I’ve written about trouble sleeping with chronic pain before, but in the quest for a good night’s sleep, we often overlook the most obvious culprit: our bedroom environment.

    Believe it or not, the setup and condition of your room can significantly impact your sleep quality. If you find yourself tossing and turning night after night, it might be time to examine these factors more closely. Here are some critical things to consider about whether the room you sleep in could be contributing to your insomnia– and a free printable with important questions to ask about your sleep space.

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    Navigating Relationships with Chronic Pain with Unity & Partnership

    silhouettes of two people kissing on a background of orange and blue, text reads "Thriving as a Team Unity and Partnership When Navigating Chronic Pain In Relationships janetjay.com

    Despite whatever conditions are in play, there are ways to find and build a healthy romantic partnership where you thrive as a team. Here’s how!

    Building a healthy relationship despite chronic pain is a complex dance, one that requires grace, patience, and of course love. Whether it’s you or your partner who’s in this continuous battle, the experience affects your relationship. But here’s what I’ve learned—both from personal experience and from others walking this path: it’s not just about managing pain, it’s about managing understanding, and support in ways that make your love and relationship stronger.

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  • 10 Quotes About Chronic Pain & Joy to Motivate Your New Year & Beyond

    On a grey background of squares, text reads Top 10 inspirational quotes about chronic pain and joy to motivate you through the new year and beyond, janetjay.com

    Inspirational quotes about chronic pain that actually resonate with what we’re going through can be hard as hell to find. Living with constant pain or chronic illness is a tough slog, rougher than “able-bodied” people can ever know. Finding the joy in a life filled with pain is more difficult for us, but it’s also more important.

    That’s why for the new year I put together my top 10 favorite inspirational quotes about chronic pain and joy. I find value, comfort and motivation in these wise sayings about the change, growth, and happiness in life. And those of us with chronic pain need to seek out the joy however we can.

    Yes, we’re in pain, yes, it changed the foundation of our lives, and yes, it can be boring as hell. That doesn’t mean there isn’t joy and fulfillment out there too! But you have to get your head in the right place to find it, and you have to do the work.

    Janet Jay

    All we get is one life. We may not get to choose our bodies and how they break down on us, but we can make the best of what we have, strive to be more than we are, and appreciate the glimmers of joy every day.

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  • Gifts for People With ADHD: Hugely Helpful Last Minute Life Hacks

    Red sign saying "last minute" beside text reading "life hack gifts for people with adhd" above an illustration of hands with boxing gloves holding up a wrapped prsent in front of a background of other presents, janetjay.com. Art by storyset.

    Updated on 1/1/25.

    Gifts for people with ADHD can be hard to figure out! So consider items that can truly make a difference in their day-to-day lives. Living with ADHD often means coping with forgetfulness, limited focus, time blindness, and organizational challenges on a daily basis. Thoughtful items like these can incredibly useful for managing this condition by improving productivity, managing symptoms, and restoring a sense of control. Whether it’s morning wake up lamps, noise-cancelling headphones, or magnetic frame hangers that let you change the look of your walls on a whim, these “life hack” gifts can assist with time management, memory, attention regulation, and reducing distractions along with helping establish the routines, reminders, and focus ADHD brains need.

    The actual presents for your loved ones with ADHD are important, but more important by far is the care and consideration that you show in choosing them. They show that you listen when your loved one describes their challenges and that you truly care about helping.

    The actual presents for your loved ones with ADHD are important, but more important by far is the care and consideration that you show in choosing them. They show that you listen when your loved one describes their challenges and that you truly care about helping.

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  • Surprise friends w/ The Most Useful Gifts For People With Fibromyalgia This Holiday Season

    Text reads "this holiday season, surprise your friends with the most useful gifts for people with fibromyalgia," above a smartphone wearing a santa hat and surrounded by snowflakes, smartphone screen reads "2023 gift guide, janetjay.com"

    Gifts for people with fibromyalgia that truly help make life easier

    Gifts for people with fibromyalgia aren’t hard to come up with: you just have to put yourself in their shoes. (Hopefully, cute ones.) Though fibro is an invisible disability, that doesn’t make its effects, like chronic widespread pain, fatigue, sleep issues, and sensitivity to movement and environmental stimuli, any less real. 

    If you had those limitations, what day-to-day tasks might be challenging to get through or what self-care strategies might help? Think about the particular person you’re shopping for: what do they struggle with, and how could you help?

    A well-thought-out gift shows care and compassion for your loved one and their limitations. But above all, useful gadgets and relaxation-promoting treats given as gifts for people with fibromyalgia help remind them of the greatest present of all: that you listen and that you care.

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    Quotes About Self Care (& Self Care Quotes About Invisible Illness)

    Cartoon of a woman at a desk stretching her arms over her head as a star flies overhead underneath the text "best quotes about self care, self care quotes about invisible illness & chronic pain, janetjay.com"

    Quotes about self-care, especially self-care quotes about invisible illness, are hard to come by. Well, good ones at least– you can find sappy schlock everywhere. But there are also gems, little bits of wisdom that remind me to take time for myself, helping me through the chronic pain of my invisible illnesses. Click one in the gallery below or scroll down to read a few of my favorites: where they come from, why I chose them, and what they mean to me.

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  • Cool Canes For Chronic Pain: Coming soon!

    man at desk with laptop, lamp, and balled up paper, thought cloud shows a lightbulb covered in clouds. Idea illustrations by Storyset

  • New Generations, Old Genes: A Guide to Family Planning with Genetic Disorders

    "Family planning with genetic disorders" and "janetjay.com" on sheets of paper in front of six polaroids of different types of families and children

    Before starting a family, make sure you understand your genetic situation and how it can affect pregnancy and your prospective child.

    Family planning can be an exciting and emotional time for any couple. However, if you have a genetic disorder, finding your soulmate isn’t enough: there are other questions to consider. From talking to your doctor about the risks of having a child to considering alternative options such as adoption or embryo screening, navigating family planning with genetic disorders can feel overwhelming. In this guest post, Melissa Howard from StopSuicide.info explores some important steps to help you make informed decisions.

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    Best Inspiring Quotes About Invisible Illness

    Line drawing of a woman in PJs and hair in a bun sitting cross-legged reading a red book, text reads "inspiring quotes about invisible illness, janetjay.com"

    Quotes about invisible illness, chronic pain, and disability pride to inspire us all

    Quotes about invisible illness are too often filled with sappy, inspirational cliches. But that doesn’t change the need that people with chronic pain and invisible disabilities have for guidance, understanding and truth.

    An image of four people with yellow pants, green shirts and three of them have their arms in the air, one in a wheelchair and one with a prosthetic leg. Text reads "janetjay.com, Your Top Qs Answered about invisible illnesses, chronic pain, mental health and Disability Pride month"
    Questions about invisible disabilities? Check out this piece on Disability Pride Month!

    In the two decades that I’ve been in pain, I’ve managed to build a life and become a person I’m proud of– and disability pride is a big part of that. During that struggle, I’ve collected a few quotes about invisible illness (and pain, hope, and joy) that really speak to me, so I figured Disability Pride Month is a good time to share.

    Some of these quotes are from people who experience(d) invisible, chronic pain, like Anne Reeve Aldrich and Elizabeth Taylor. (And check out my profile on Selma Blair for another chronic illness badass!) Others, like the quotes from Dostoyevsky, Kahlil Gibran, and the Greek stoic Seneca illustrate the wisdom that can come from the loneliness, suffering and struggle our medical conditions (and their consequences) cause. Finally, there’s hope, which is absolutely vital for anyone with health struggles… or struggles in general. Check out the quotes from Joseph Campbell, Alfred Lord Tennyson, Frederick Buechner and Barbara De Angelis for meditations on how to keep hope alive.

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    Chronic pain & trouble sleeping: sleep routines may cure your insomnia

    Cartoon in blue shades of a woman lying on her stomach in bed, looking at a clock reading "2:58 with a tired grumpy look with text around her reading "chronic pain and trouble sleeping: a sleep routine may be your cure for insomnia, janetjay.com Cartoon in blue shades of a woman lying on her stomach in bed, looking at a clock reading "2:58 with a tired grumpy look with text around her reading "chronic pain and trouble sleeping: a sleep routine may be your cure for insomnia, janetjay.com
    On a white background with a plant, a tablet and two sheets of paper read "sleep goals, current sleep, sleep routine" under text that says "free sleep noteboook printables available, www.janetjay.com
    Want to develop better sleep hygiene habits? For a limited time you can download 3 sleep routine printables for FREE to help you figure out the best strategies to get you snoozing.

    A sleep routine (aka “sleep hygiene): if you have chronic pain, anxiety, ADHD and insomnia (or any combo thereof), like I do, this simple process might just be the “cure” for insomnia you’ve been seeking. “Sleep hygiene” is the process of creating an environment that can help you fall asleep and stay asleep. Here are a few things that might be keeping you up, especially if you have chronic pain or mental health issues, and some strategies you can use to combat them. (Including a pack of free bedtime routine printables!)

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    How To: Dating With Chronic Pain or Dating With Invisible Disabilities

    On a background of red and black hearts, image of two phones side by side illustrating dating, the left with a man and a heart and the right a woman with two smiley faces, looking towards each other. Text reads "dating with chronic pain and invisible disabilities, janetjay.com"

    Dating with chronic pain is tough, especially if there’s nothing visible about your condition. Finding someone using dating dating apps like Hinge or Tinder is hard to begin with, but dating with a disability, especially invisible illnesses, adds a whole other level of difficulty.

    In some ways using those apps would be easier if I was visibly disabled and used a wheelchair or crutches. It would at least be simpler than trying to put together a profile when I’m dating with chronic pain and dating with invisible disabilities like fibromyalgia, migraine disease, back pain, joint pain, nerve pain, and mental health issues (that’s what I’m dealing with)! But it also applies to a wide range of other issues like EDS, POTS, arthritis, Crohn’s, lupus, other autoimmune disorders, and/or any disability where you look like everyone else.

    Most of the time you wouldn’t know I’m in pain, even though I always am. But it hugely affects my life, and it’s important that anybody I have as a partner be aware of it and OK with it. No, actually, it’s important that anybody I have as a partner be supportive, empathetic and caring about it.

    But how do you find that person through the hellscape that is modern dating apps? If you’re dating with chronic pain or dating with invisible disabilities, consider the following before writing your profile.

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  • Graphic Novels About Chronic Pain: “Pain Is Really Strange”

    On a background of neurons, the cover of a graphic novel called "pain is really strange" with a head, shown with brain with a little man on top with horns with sound waves coming from them. Text reads "Graphic novels about pain: "Pain is Really Strange," by steve haines, art by sophie standing, janetjay.com"

    Graphic novels about chronic pain are few and far between: “Pain Is Really Strange” is a welcome find

    I love books, especially graphic novels. I was at the library recently and stumbled on “Pain Is Really Strange,” one of the only graphic novels about chronic pain I’ve ever seen. (Thanks, Austin Public Library!)

    Drawing of a man sitting before a poster of the human body with red lines representing nerves/pain, with a speech bubble saying "pain is really strange"

    Explaining “What is pain? How do nerves work?”

    Above all, the book does a really good job of explaining important stuff simply. Without feeling overwhelming, it not only explains the difference between chronic and acute pain but also tackles fairly complicated concepts like neurotags and brain plasticity. Getting the combo of science and visuals right isn’t an easy trick. I was especially impressed at how well this team accomplished making a comic about pain that was accurate as well as visually pleasing.

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  • Acupuncture for Pain: Complementary Medicine That Works

    header with stick figures at bottom performing cupping, massage and acupuncture, text reads "complementary medicine that works: Acupuncture for pain, janetjay.com"

    This ancient complementary therapy may help chronic neck pain, lower back pain, joint pain, nerve pain, mental health, invisible illnesses and so much more

    Acupuncture for pain is one of the oldest forms of complementary medicine on earth. Read on for more about the history of acupuncture (and acupuncture for pain, specifically). I’ll dive into what it is, what we understand about how it works, and if it may help you.

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    Best Quotes About Chronic Pain, Disability, & Mental Health

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    Quotes about chronic pain, chronic illness & disability that inspire without being saccharine

    Updated in November 2024 and February 2025.

    Life with a chronic illness or disability is hard– hell, life alone is hard, and those of us with pain are carrying a heavier load than most. I think most wisdom comes from experience: the best quotes about chronic pain, disability and mental health come from those living with them day in and day out.

    Do I need inspiration and motivation as much as the next girl? Sure. But a lot of the “inspirational’ quotes about chronic pain and mental health challenges are too sweet or too sappy to be helpful for my sarcastic, sardonic self. So this year, when I see the rare quote about disability that really resonates with me, I’ve decided I’m going to make a graphic for it so I don’t forget. I’ll keep updating as I find more quotes about chronic pain (etc etc) that are encouraging without being… too much. I promise, no “live laugh love” posters.

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    Top 15 Chronic Pain Gifts To Help Patients Around the House

    on background of wrapped presents and snowflakes showing chronic pain gifts, text reads "top 15 gifts that help chronic pain patients around the house"

    Gifts for chronic pain patients that’ll be used and appreciated long after the holidays have passed.

    Gifts for chronic pain patients can be so dang hard to shop for! So I’ve thought about all the discoveries and doohickeys I’ve used over the years to put together the ultimate list of the top dozen around-the-house gifts for people like me. Everyone’s limitations are different, but as someone with invisible disabilities and chronic illnesses I’ve found all of these items to be relatively inexpensive ways of making my day-to-day life easier.

    Whether it’s cleaning, working, moving around, walking the dogs or just picking something up off the floor, these gifts for chronic pain patients will be used and appreciated long after the holidays have passed.

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    Keeping a medical log-with free printable & spreadsheet!

    Surface of a desk with a phone with a spreadsheet on it and a piece of paper with the free printable medical log. Text: Why you should keep a medical log-- free printable and spreadsheet

    This free printable medical log is the quickest and easiest way of staying on top of contact with your medical team, especially for patients with complex health conditions. I’ll explain why you should keep track, then you can download a free printable medical log and/or spreadsheet and learn how to adapt them to the specific needs of your chronic pain, invisible illnesses, or complicated medical issues.

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  • What Star Trek Got Wrong about Geordi’s Disabilities

    on a background of stars, an ink sketch of the VISOR, the adaptive device that lets Geordi participate on the level with peers who are not disabled. Text reads "what star trek got wrong about geordi's disabilities, janetjay.com"

    I love Star Trek. I love the character of Geordi La Forge, the Enterprise’s chief engineer, who had been blind since birth and used a device called a VISOR to see. And overall, I think his character was more positive than negative. In Star Trek: The Next Generation, La Forge’s disabilities were usually so well accommodated that they almost became non-issues. He could do the job just as well as anyone else, and better sometimes. As a result, a lot of the time his blindness never even came up. Which is awesome!

    However, I’ve been rewatching TNG recently and damn, for a show that was often so amazing, and so groundbreaking in many ways, there were also some pretty glaring missteps. So I went down a rabbit-hole to bring you a few ways that Star Trek really messed up when talking about Geordi La Forge’s disabilities.

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    Top Qs about Invisible Illnesses & Disability Pride Month

    An image of four people with yellow pants, green shirts and three of them have their arms in the air, one in a wheelchair and one with a prosthetic leg. Text reads "janetjay.com, Your Top Qs Answered about invisible illnesses, chronic pain, mental health and Disability Pride month, janetjay.com"

    Invisible disabilities, including mental health and chronic pain issues, are tough for a lot of reasons. One of the hardest things about living with invisible illness is never quite knowing where you belong. Too many people hear “disabled” and all that comes to mind is a paralyzed person in a wheelchair. It never occurs to them that 20% of the country, 50 million Americans, have some form of chronic pain, or that invisible disabilities such as CRPS, fibromyalgia and migraine disease make up a large portion of that number. Even doctors and other medical professionals can fall into the trap of saying stuff like “you’re too young to be in pain.” It never crosses many people’s minds that someone in a wheelchair may well be able to stand up and walk around, looking completely ‘normal,’ but still truly need that chair!

    July is Disability Pride Month, but those of us with less visible issues can be hesitant to participate, unsure if it’s really our place to use the word “disabled.” Scroll down for answers to some of the top questions people with invisible illnesses, including chronic pain and mental health issues, ask about disability pride, disability rights, and disability as a whole.

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  • 6 Disabled Inventors You’ve Never Heard Of

    text reads "6 world-changing disabled inventors you've never heard of before, janetjay.com

    A selection of physically disabled inventors who changed the world we live in

    May is National Inventor’s Month! And that inspired me to learn about some of the many scientists and inventors with disabilities. Some are well-known — Steven Hawking, Temple Grandin– while others are famous names whose disabilities I’d never heard a dang thing about (Isaac Newton had epilepsy?!). I learned how many truly incredible scientists have suffered vision or hearing loss… but as someone with invisible chronic pain, I decided that that was a bit out of my lane to focus on. That’s why I’ve put together a selection of physically disabled inventors whose names were completely new to me, but have nonetheless shaped the world we live in.

    1. Ferida Bedwei: Software engineer, small business, author
    2. Hugh Herr: Mechanical engineer and biophysics/ biomechatronics
    3. Ralph Braun: Inventor and mechanical engineer
    4. Charles C. Price: Chemist
    5. Dr. Odette L Shotwell: Organic chemist
    6. Dr. Florence Seibert: Biochemist
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    Why I Didn’t Write About Medical Cannabis On 4/20

    On a white background with cannabis leaves around the bottom and right edges, text reads "Happy 4/21-- why i didn't write about medical cannabis yesterday, janetjay.com"

    Happy 4/21! I didn’t write about medical cannabis yesterday, even though I wanted to. Why? Texas, mostly.

    Listen, I’m happy that my sister in Seattle can walk down the street and buy anything she wants. (Really! I am truly thrilled at the spread of legalization, not being sarcastic.). But even though I’ve been in constant joint and nerve pain since I was 15, I can’t. I’m so glad my colleague’s state has such a thriving medical cannabis program that she’s fighting over things like insurance coverage. But there is no medical cannabis program in my state whatsoever. (“Medical marijuana” with no THC doesn’t fucking count. CBD alone does zilch for some people.) This means that anyone with chronic pain who wants to use marijuana for pain relief has to chance telling their doctor about it, and possibly losing that doctor, or not telling their doctor, technically breaking their ‘pain contract,’ also potentially losing that doctor.

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    6 Qs People W/Disabilities Should Ask Before Getting a Dog

    Silhouette of a person in a wheelchair about to give a treat to a dog jumping up, another dog beside him. Text reads "6 CRUCIAL QUESTIONS People with Disabilities should ponder before getting a dog, janetjay.com"

    This post was also published in The Mighty in March 2023.

    For people with disabilities, getting a dog can be a life-changing experience. In addition to company and love, caring for a dog can get you out of your own head and off the couch at times when you wouldn’t or couldn’t otherwise. Owning a dog is a great way to meet new people and a great excuse to get out in the world (we’re talking pets here, not service dogs). But that doesn’t make dog “parenting” easy, cheap, or something you should get into without fully thinking through all aspects of the choice. For disabled people, getting a dog is even more of an undertaking!

    If you’ve got disabilities or chronic pain and are thinking about getting a dog, ask yourself these 6 crucial questions first:

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    Guilt-Free Self-Care Tips for Introverts

    Pink background with hand holding coffee cup reading "busy introverting," text: Guilt-free self care tips for introverts, janetjay.com

    Guest post by Melissa Howard of Stop Suicide

    There’s a wide range of self-care tips for introverts out there, from putting down devices and practicing mindfulness to learning how to say no without feeling guilty. For individuals who have social anxiety, chronic pain, or just need to have quiet alone time, there are several methods of care to choose from.

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    Murderball: Massacring Misconceptions

    a photo of a man in a wheelchair holding a ball, and another of a man in a special type of wheelchair, text between them reads "massacring misconceptions: murderball-- the quad rugby doc that changed how i thought about disability, janetjay.com"

    Wanna watch Murderball? Stream it legally on Philo or Fubo.tv. Or use your library card on Kanopy. Youtube also has multiple full copies of it up.
    March 2024 update: Looks like Prime’s got it now too! Or you can just buy the dang DVD.

    Here’s a TL;DR up front: If you’ve never seen Murderball, go watch Murderball. It’s a hell of a sports saga about quad rugby (murderball) teams, international rivalries, and competition at the highest levels. It’s also a human story about people who have been through some shit... and come out the other side with pride, self-confidence and the desire to slam into others in an armored chair. The quote below, from a many-year veteran of the sport, sums it up best:

    Text on yellow background: "The critics got one thing wrong: Murderball doesn't dispel myths and stereotypes.  It takes big fat bites out of those sugary sweet, pathetic images and stereotypes, chews 'em up and spits 'em out. It's not a magic pill that will make pity and stereotypes go away, but it is quite simply the best film ever made on disability.  It amazes me that these filmmakers were able to render such an honest portrayal of living life from the seat of a wheelchair.  Somehow, either by the sheer exposure to the people or by some innate understanding, directors Henry Alex Rubin and Dana Adam Shapiro "got it," and this film is a joy to watch, especially the way we did, with family and about 12 other quads. This movie is funny. It is sad.  It is fiery, fast, frank, explosive, sexy, tender, loving, and the action is bone-jarring, just like quad rugby, aka Murderball. - Ed Hooper"
    Read Hooper’s full review here.
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    Gift Guide For Chronic Pain, Part 1 — UPDATED!

    "gift guide for chronic pain" with pictures of various health-related items, "updated with even more gifts! Janetjay.com" on a background of stars

    This story was most recently updated on 11/1/2024.

    Christmas is coming, and that’s got me thinking about all the little gadgets I continually recommend to my friends. Some of this stuff took me 20 years to learn about (Theracane, where were you all my life?!) and some are old standbys that can help a surprising amount.

    Here’s a gift guide for chronic pain patients full of guaranteed wins– mostly items I currently own and use myself. (Of course, if you have chronic pain yourself and this stuff sounds rad, you know what I always say…

    meme of tom from parks and rec throwing a scarf over his shoulder and saying treat yo self
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    Pain Scales (1-10): How To Explain Your Pain

    on a purple background, text reads "how to use pain scales to explain your pain even though it sucks, janetjay.com" with "sucks" in rainbow, one color for each letter

    Pain scales: 1-10, pick a number to describe your agony. Because it’s so damn easy.

    Ten means the worst pain you’ve ever experienced. Or else the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.”  My new favorite 1-10 scale for pain is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it.   All those things are completely different, of course. I mean… go look at those definitions again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by ‘the worst pain ever felt,’ my entire 1-10 scale of pain would have changed after my L5-S1 disc herniated. Does that mean that my 7 is now a 5 because the scale has been stretched? What about everything else? Dear migraine, how do I compare thee to a laminectomy?

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    How Selma Blair’s Canes Support Me Too

    B&W picture of a woman with short hair, a cane in her right hand and her left hand in the air, frm the back, text reads "how selma blair's cool canes support me too, janetjay.com "

    Though an MS diagnosis forced her to rely on mobility aids, Selma Blair’s canes are stylish as hell. Her embrace of her new challenges, and finding fashionable, cool canes that “fit right and look cool,” has meant so much to me as someone with chronic pain who still gets embarrassed about mobility aids sometimes. But as Blair said, “It can still be chic. You shouldn’t have to sacrifice style.”

    Representation and Inspiration

    Let’s talk about representation,  something that has always seemed like it… wasn’t for me.  I’m a white, upper-middle-class kid from the suburbs, and none of my issues are immediately visible. I have an assortment of mental health problems and ADHD and you can’t see that either (well, except for all the fidgeting and doodling). My physical disabilities– fibromyalgia, migraines, a fucked up spine, a sprinkling of CPRS– are usually invisible, except when the pain forces me to use a cane or a wheelchair.

    B&W pic of selma blair on a vanity fair red carpet in a ballgown with a black cane, facing the camera but looking and waving over her shoulder at the crowd of photographers
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    So Much More Than a Headache: What’s Your Migraine Routine?

    On a light blue background, "so much more than a headache" with a clipart of a head with a brain and a red arrow pointing to the brain, speech bubble says "what's your migraine routine?" janetjay.com

    A migraine routine can make a huge difference in getting through attacks of this invisible illness

    I have been coping with chronic migraine disease since my teens. But now that I’ve got a migraine routine down, it makes the whole situation a little bit more manageable. Here’s what a day with a migraine looks like for me and how I deal with it.

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    Chronic Pain, Weight, & The Challenge of Getting Through The Damn Day

    On a torn piece of teal paper held on by tape, text box reads "chronic-pain-weight-getting-through-the-damn-day, janetjaycom"

    Chronic pain and weight concerns can be really hard to communicate to people who haven’t dealt with similar issues. It’s not just about hurting all the time. It’s about the pain taking up so much of your being, so much of your energy, and so much of yourself that you just don’t have enough to deal with other things. Stuff like anger, stuff like weight gain, stuff like frustration, stuff like anxiety–  it’s all tied in together. And none of it lends itself to a 1-10 pain scale.

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    Complementary Medicine That Works: Biofeedback –Migraine Update!

    text: "complementary medicine that actually works: biofeedback migraine breakthrough update janetjay.com" over a blurry graph on a monitor

    Biofeedback for migraines and chronic pain is one of the only complementary medicines that really helped me

    This post has been updated twice, in 2022 and in February 2025.

    Complementary medicine: what works and what doesn't
    What’s “complementary medicine” and does it work? Read theintro to this series to find out!

    Biofeedback for my migraines and chronic pain in general was one of the only alternative / complementary treatments I’ve tried over the last 20 years that helped at all. And with new research coming out about biofeedback for migraine, I’m even more excited about its possibilities to help people in pain.

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    Complementary Medicine: What Works and What Doesn’t

    Introduction:

    Complementary medicine is not most people’s first choice. My pain started when I was 15: nobody knew what was wrong or how to fix it (I didn’t get a diagnosis or explanation for well over a decade), and after all the doctors threw up their hands, we were grasping at straws. My mother, bless her, dragged me to everything she could think of to help me, even stuff like hypnosis that I wouldn’t have chosen for myself. 

    Over the last 20 years, I’ve tried (and retried) many more options. Some of them helped; most of them didn’t. The majority of complementary treatments I’ve tried have been an expensive way of pissing money away. But there ARE things that can really, truly help. Everyone is different, and everyone’s pain is different. But here’s what helped me– and what didn’t.

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Hopefully this site will help you avoid some of the BS I’ve experienced over the last 20 years seeking treatment for my chronic pain, invisible illnesses & mental health challenges. Maybe it’ll even help you think about disability in a new way! But at the very least, I hope you learn something, and I hope it helps you feel less alone.

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