MUSE: Being Alive and Chronically Ill

Edition 5 is a practical and honest look at the daily life of a chronically ill person- what it feels like, how we adapt to fit the world, and why so many people still don’t understand. It’s full of comfort rituals sharp commentary, lived experiences. and low-effort recipes for people who live with chronic illness or those who want to understand what we go through. Interviews, and stories that talk about the real live lived experiences, the gaslighting by others and by ourselves, and the grief for what might have been. This is a validation, a look at survival, and making space for the messy reality of chronic illness life.

Sources for this Zine:

Memes and images from:
https://mission-cure.org/30-memes-that-perfectly-describe-life-with-chronic-illness/

Recipes:
8 Simple Meals for the Chronically Ill – Chronic Mom A practical list of quick, low-effort meals like slow cooker meatballs, rotisserie chicken salads, and baked salmon with minimal prep. These recipes are designed for days when energy is scarce and time is tight.
https://www.chronicmom.com/2018/05/8-simple-meal-ideas-for-the-chronically-ill.html/

40 Easy Comfort Recipes to Make When You’re Feeling Sick – The Kitchn While not chronic illness-specific, this roundup includes soft, soothing meals like pastina, dumpling soup, and simple broths that are easy to digest and comforting on flare days.
https://www.thekitchn.com/10-quick-and-nourishing-meals-to-make-on-a-sick-day-248399

9 Cooking Hacks for People With Chronic Illness – The Mighty Not just recipes, but smart adaptations—like using a stool at the counter, one-dish meals, and pre-chopped ingredients—to make cooking more accessible when energy or mobility is limited.
https://themighty.com/topic/chronic-illness/cooking-with-chronic-illness/

What’s the difference between acute illnesses and chronic illnesses?

Medical News Today – Acute vs. chronic conditions: How are they different? https://www.medicalnewstoday.com/articles/acute-vs-chronic-conditions
https://primehealthofnj.com/what-is-a-chronic-disease/

A Glossary for the Chronically Ill Life

image: https://endoexcellencecenter.com/endometriosis-and-fatigue-effective-strategies-for-regaining-energy/

Spoon Theory: A Language for the Invisible Math of Chronic Illness

image: https://pixnio.com/objects/soup-spoons
Christine Miserandino, “The Spoon Theory” – But You Don’t Look Sick https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Healthline: “What Is Spoon Theory?” https://www.healthline.com/health/spoon-theory

The Mighty: “What Spoon Theory Means to Me” https://themighty.com/topic/chronic-illness/spoon-theory-definition/

Your are NOT alone!
Centers for Disease Control and Prevention (CDC). “Chronic Diseases in America.” https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm
Vogue, September 2017 interview; Netflix documentary Gaga: Five Foot Two
Billboard, October 2017; Today Show interview

CBS News, April 2010; Essence interview

The Mirror, 2013; The Guardian, 2011

Michael J. Fox Foundation website; People magazine, 2020

New York Times, November 2022; Variety interview

People magazine, 2020; Good Morning America interview

Red Table Talk, 2018; Worthy memoir, 2023

New York Times, 2011; Women’s Health interview

Beyond Type 1 Foundation; Rolling Stone interview

Keeping Up with the Kardashians; Poosh blog

Today Show, November 2015

Diabetes Forecast magazine; People magazine

InStyle, 2022; Vogue interview

People magazine, 2019; The New York Times
https://www.cbsnews.com/news/toni-braxton-lupus-symptoms-diagnosis

Mini Bio: Toni Bernhard

Bernhard, Toni. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Wisdom Publications, 2010.

Bernhard, Toni. How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Wisdom Publications, 2013.

Bernhard, Toni. How to Live Well with Chronic Pain and Illness: A Mindful Guide. Wisdom Publications, 2015.

Bernhard, Toni. “Turning Straw Into Gold.” Psychology Today, ongoing blog. https://www.psychologytoday.com/us/blog/turning-straw-gold

UC Davis School of Law – Faculty Profile Archive (for her former academic role)

Interview with Toni Bernhard on The Mighty, 2016: “How to Be Sick and Still Be Well”

Bernhard, Toni. “10 Tips From 10 Years Sick.” Turning Straw Into Gold, Psychology Today, Sept 2011.

Put together a “flare kit: for those days when your body says no.

The Mighty: “24 Things to Put in Your Chronic Illness ‘Crisis Kit’” https://themighty.com/topic/chronic-illness/chronic-illness-crisis-kit-products-emergencies-flare-ups/

The Spoonie Chef: “Flare Day Care Kit” http://thespooniechef.com/flare-day-care-kit/

The Discerning You: “Flare Survival Kit for Chronic Illness” https://thediscerningyou.com/chronic-illness-flare-kit/

9 Facts About Chronic Illness

Mayo Clinic – Autoimmune Disease Diagnosis Delay https://newsnetwork.mayoclinic.org/discussion/new-study-calculates-autoimmune-disease-prevalence-in-u-s/

CDC – ME/CFS Data Brief https://www.cdc.gov/nchs/data/databriefs/db488.pdf

Harvard Medicine Magazine – Gender Bias in Medicine https://magazine.hms.harvard.edu/articles/how-gender-bias-medicine-has-shaped-womens-health

Medical News Today – Gender Bias in Healthcare https://www.medicalnewstoday.com/articles/gender-bias-in-healthcare

Geena Davis Institute – Disability Representation on Television https://geenadavisinstitute.org/wp-content/uploads/2025/03/GDI-March-2025_The-State-of-Disability-Representation-on-Television_An-Analysis-of-Scripted-TV-Series-From-2016-to-2023.pdf

Disability Belongs – Luminate Report on Media Representation https://www.disabilitybelongs.org/2023/04/new-luminate-report-representation/

NIH – Clinical Trial Diversity https://report.nih.gov/nihdatabook/report/clinical-trials

Invisible Doesn’t Mean Imaginary: Exploring the Social Dynamics of “Looking Fine” While Feeling Awful

Harvard Medicine Magazine – How Gender Bias in Medicine Has Shaped Women’s Health https://magazine.hms.harvard.edu/articles/how-gender-bias-medicine-has-shaped-womens-health

Healthline – Chronic Illness and Medical Gaslighting: Why Patients Aren’t Being Heard https://www.healthline.com/health-news/chronic-illness-and-medical-gaslighting-why-patients-arent-being-heard

CDC – Chronic Disease Overview https://www.cdc.gov/chronic-disease/overview/index.htm

Fast Facts: Health and Economic Costs of Chronic Conditions https://www.cdc.gov/chronic-disease/data-research/facts-stats/index.html

Sharpies, Strokes, and Storytelling

Highland Center for the Arts: https://highlandartsvt.org/open-air-gallery-ski-and-snowshoe-trail-2022/willow-bascom/ LupusChick: https://lupuschick.com/5-inspiring-artists-with-lupus-and-other-chronic-illnesses/

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Chrissy Bernards: bs social sciences and entrepreneurship. ms (june 2026) food systems and society.

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