#chronic illness resources

[mandana-the-service-pup]

In my post-exertional stupor, I made a fatal error with Mandanas Ruffwear Float Coat. Don’t ask me how but it was shredded 😬

No worries. We can fix this.

“Anything worth doing is worth doing right”

….yeah, no one has spoons for that so here’s a quick & easy stitch for fixing your stuff when you f*ck it up 😭

It’s called the Parachute Ranger Stitch. Here are better instructions than what I can give you.

If you want it done “right” you can trim the frayed edges, use more stitches/inch and keep the tension even so that the edges just meet and it lays flat….but like I said, no spoons 😮‍💨

[mental-mona]

This is a masterlist of helpful blog posts for a newly-diagnosed chronic illness patient. It's pretty comprehensive in topics covered.

[sickly-sapphic]

this disability pride month you can help disabled people by continuing to mask up, using appropriate masks (KN95 or N95) and appropriate masking technique (wash your hands before and after putting it on, don't touch the front, make sure there's no gaping) 🫧

[triumph-of-adaptation]

Cripthegig for alt text/id

[disabled-dragoon]

The Disability Library

I love books, I love literature, and I love this blog, but it's only been recently that I've really been given the option to explore disabled literature, and I hate that. When I was a kid, all I wanted was to be able to read about characters like me, and now as an adult, all I want is to be able to read a book that takes us seriously.

And so, friends, Romans, countrymen, I present, a special disability and chronic illness booklist, compiled by myself and through the contributions of wonderful members from this site!

As always, if there are any at all that you want me to add, please just say. I'm always looking for more!

Edit 20/10/2023: You can now suggest books using the google form at the bottom!

Updated: 31/08/2023

Articles and Chapters

The Drifting Language of Architectural Accessibility in Victor Hugo's Notre-Dame de Paris, Essaka Joshua, 2012

Early Modern Literature and Disability Studies, Allison P. Hobgood, David Houston Wood, 2017

How Do You Develop Whole Object Relations as an Adult?, Elinor Greenburg, 2019

Making Do with What You Don't Have: Disabled Black Motherhood in Octavia E. Butler's Parable of the Sower and Parable of the Talents, Anna Hinton, 2018

Necropolitics, Achille Mbeme, 2003 OR Necropolitics, Achille Mbeme, 2019

Wasted Lives: Modernity and Its Outcasts, Zygmunt Bauman, 2004

Witchcraft and deformity in early modern English Literature, Scott Eaton, 2020

Books

Fiction:

Misc:

10 Things I Can See From Here, Carrie Mac

A-F:

A Curse So Dark and Lonely, (Series), Brigid Kemmerer

Akata Witch, (Series), Nnedi Okorafor

A Mango-Shaped Space, Wendy Mass

Ancillary Justice, (Series), Ann Leckie

An Unkindness of Ghosts, Rivers Solomon

An Unseen Attraction, (Series), K. J. Charles

A Shot in the Dark, Victoria Lee

A Snicker of Magic, Natalie Lloyd

A Song of Ice and Fire, (series), George R. R. Martin

A Spindle Splintered, (Series), Alix E. Harrow

A Time to Dance, Padma Venkatraman

Bath Haus, P. J. Vernon

Beasts of Prey, (Series), Ayana Gray

The Bedlam Stacks, (Series), Natasha Pulley

Black Bird, Blue Road, Sofiya Pasternack

Black Sun, (Series), Rebecca Roanhorse

Blood Price, (Series), Tanya Huff

Borderline, (Series), Mishell Baker

Breath, Donna Jo Napoli

The Broken Kingdoms, (Series), N.K. Jemisin

Brute, Kim Fielding

Cafe con Lychee, Emery Lee

Carry the Ocean, (Series), Heidi Cullinan

Challenger Deep, Neal Shusterman

Cinder, (Series), Marissa Meyer

Clean, Amy Reed

Connection Error, (Series), Annabeth Albert

Cosima Unfortunate Steals A Star, Laura Noakes

Crazy, Benjamin Lebert

Crooked Kingdom, (Series), Leigh Bardugo

Daniel Cabot Puts Down Roots, (Series), Cat Sebastian

Daniel, Deconstructed, James Ramos

Dead in the Garden, (Series), Dahlia Donovan

Dear Fang, With Love, Rufi Thorpe

Deathless Divide, (Series), Justina Ireland

The Degenerates, J. Albert Mann

The Doctor's Discretion, E.E. Ottoman

Earth Girl, (Series), Janet Edwards

Everyone in This Room Will Someday Be Dead, Emily R. Austin

The Extraordinaries, (Series), T. J. Klune

The Extraordinary Education of Nicholas Benedict, (Series), Trenton Lee Stewart

Fight + Flight, Jules Machias

The Final Girl Support Group, Grady Hendrix

Finding My Voice, (Series), Aoife Dooley

The First Thing About You, Chaz Hayden

Follow My Leader, James B. Garfield

Forever Is Now, Mariama J. Lockington

Fortune Favours the Dead, (Series), Stephen Spotswood

Fresh, Margot Wood

H-0:

Harmony, London Price

Harrow the Ninth, (series), Tamsyn Muir

Hench, (Series), Natalia Zina Walschots

Highly Illogical Behaviour, John Corey Whaley

Honey Girl, Morgan Rogers

How to Become a Planet, Nicole Melleby

How to Bite Your Neighbor and Win a Wager, (Series), D. N. Bryn

How to Sell Your Blood & Fall in Love, (Series), D. N. Bryn

Hunger Pangs: True Love Bites, Joy Demorra

I Am Not Alone, Francisco X. Stork

The Immeasurable Depth of You, Maria Ingrande Mora

In the Ring, Sierra Isley

Into The Drowning Deep, (Series), Mira Grant

Iron Widow, (Series), Xiran Jay Zhao

Izzy at the End of the World, K. A. Reynolds

Jodie's Journey, Colin Thiele

Just by Looking at Him, Ryan O'Connell

Kissing Doorknobs, Terry Spencer Hesser

Lakelore, Anna-Marie McLemore

Learning Curves, (Series), Ceillie Simkiss

Let's Call It a Doomsday, Katie Henry

The Library of the Dead, (Series), TL Huchu

The Lion Hunter, (Series), Elizabeth Wein

Lirael, (Series), Garth Nix

Long Macchiatos and Monsters, Alison Evans

Love from A to Z, (Series), S.K. Ali

Lycanthropy and Other Chronic Illnesses, Kristen O'Neal

Never Let Me Go, Kazuo Ishiguro

The Never Tilting World, (Series), Rin Chupeco

The No-Girlfriend Rule, Christen Randall

Nona the Ninth, (series), Tamsyn Muir

Noor, Nnedi Okorafor

Odder Still, (Series), D. N. Bryn

Once Stolen, (Series), D. N. Bryn

One For All, Lillie Lainoff

On the Edge of Gone, Corinne Duyvis

Origami Striptease, Peggy Munson

Our Bloody Pearl, (Series), D. N. Bryn

Out of My Mind, Sharon M. Draper

P-T:

Parable of the Sower, (Series), Octavia E. Butler

Parable of the Talents, (Series), Octavia E. Butler

Percy Jackson & the Olympians, (series), Rick Riordan

Pomegranate, Helen Elaine Lee

The Prey of Gods, Nicky Drayden

The Pursuit Of..., (Series), Courtney Milan

The Queen's Thief, (Series), Megan Whalen Turner

The Quiet and the Loud, Helena Fox

The Raging Quiet, Sheryl Jordan

The Reanimator's Heart, (Series), Kara Jorgensen

The Remaking of Corbin Wale, Joan Parrish

Roll with It, (Series), Jamie Sumner

Russian Doll, (Series), Cristelle Comby

The Second Mango, (Series), Shira Glassman

Scar of the Bamboo Leaf, Sieni A.M

Shaman, (Series), Noah Gordon

Sick Kids in Love, Hannah Moskowitz

The Silent Boy, Lois Lowry

Six of Crows, (Series) Leigh Bardugo

Sizzle Reel, Carlyn Greenwald

The Spare Man, Mary Robinette Kowal

The Stagsblood Prince, (Series), Gideon E. Wood

Stake Sauce, Arc 1: The Secret Ingredient is Love. No, Really, (Series), RoAnna Sylver

Stars in Your Eyes, Kacen Callender [Expected release: Oct 2023]

The Storm Runner, (Series), J. C. Cervantes

Stronger Still, (Series), D. N. Bryn

Sweetblood, Pete Hautman

Tarnished Are the Stars, Rosiee Thor

The Theft of Sunlight, (Series), Intisar Khanani

Throwaway Girls, Andrea Contos

Top Ten, Katie Cotugno

Torch, Lyn Miller-Lachmann

Treasure, Rebekah Weatherspoon

Turtles All the Way Down, John Green

U-Z:

Unlicensed Delivery, Will Soulsby-McCreath Expected release October 2023

Verona Comics, Jennifer Dugan

Vorkosigan Saga, (Series), Lois McMaster Bujold

We Are the Ants, (Series), Shaun David Hutchinson

The Weight of Our Sky, Hanna Alkaf

Whip, Stir and Serve, Caitlyn Frost and Henry Drake

The Whispering Dark, Kelly Andrew

Wicked Sweet, Chelsea M. Cameron

Wonder, (Series), R. J. Palacio

Wrong to Need You, (Series), Alisha Rai

Ziggy, Stardust and Me, James Brandon

Graphic Novels:

A Quick & Easy Guide to Sex & Disability, (Non-Fiction), A. Andrews

Constellations, Kate Glasheen

Dancing After TEN: a graphic memoir, (memoir) (Non-Fiction), Vivian Chong, Georgia Webber

Everything Is an Emergency: An OCD Story in Words Pictures, (memoir) (Non-Fiction), Jason Adam Katzenstein

Frankie's World: A Graphic Novel, (Series), Aoife Dooley

The Golden Hour, Niki Smith

Nimona, N. D. Stevenson

The Third Person, (memoir) (Non-Fiction), Emma Grove

Magazines and Anthologies:

Artificial Divide, (Anthology), Robert Kingett, Randy Lacey

Beneath Ceaseless Skies #175: Grandmother-nai-Leylit's Cloth of Winds, (Article), R. B. Lemburg

Defying Doomsday, (Anthology), edited by Tsana Dolichva and Holly Kench

Josee, the Tiger and the Fish, (short story) (anthology), Seiko Tanabe

Nothing Without Us, edited by Cait Gordon and Talia C. Johnson

Nothing Without Us Too, edited by Cait Gordon and Talia C. Johnson

Unbroken: 13 Stories Starring Disabled Teens, (Anthology), edited by Marieke Nijkamp

Uncanny #24: Disabled People Destroy Science Fiction, (Anthology), edited by: Elsa Sjunneson-Henry, Dominik Parisien et al.

Uncanny #30: Disabled People Destroy Fantasy, (Anthology), edited by: Nicolette Barischoff, Lisa M. Bradley, Katharine Duckett

We Shall Be Monsters, edited by Derek Newman-Stille

Manga:

Perfect World, (Series), Rie Aruga

The Sky is Blue with a Single Cloud, (Short Stories), Kuniko Tsurita

Non-Fiction:

Academic Ableism: Disability and Higher Education, Jay Timothy Dolmage

A Disability History of the United States, Kim E, Nielsen

The Architecture of Disability: Buildings, Cities, and Landscapes beyond Access, David Gissen

Being Seen: One Deafblind Woman's Fight to End Ableism, Elsa Sjunneson

Black Disability Politics, Sami Schalk

Borderline, Narcissistic, and Schizoid Adaptations: The Pursuit of Love, Admiration, and Safety, Dr. Elinor Greenburg

Brilliant Imperfection: Grappling with Cure, Eli Clare

The Cambridge Companion to Literature and Disability, Barker, Clare and Stuart Murray, editors.

The Capacity Contract: Intellectual Disability and the Question of Citizenship, Stacy Clifford Simplican

Capitalism and Disability, Martha Russel

Care work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha

Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach, Dr Amitta Shah

The Collected Schizophrenias: Essays, Esme Weijun Wang

Crip Kinship, Shayda Kafai

Crip Up the Kitchen: Tools, Tips and Recipes for the Disabled Cook, Jules Sherred

Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies, Anne Waldschmidt, Hanjo Berressem, Moritz Ingwersen

Decarcerating Disability: Deinstitutionalization and Prison Abolition, Liat Ben-Moshe

Demystifying Disability: What to Know, What to Say, and How to Be an Ally, Emily Ladau

Dirty River: A Queer Femme of Color Dreaming Her Way Home, Leah Lakshmi Piepzna-Samarasinha

Disability Pride: Dispatches from a Post-ADA World, Ben Mattlin

Disability Visibility: First-Person Stories From the Twenty-First Century, Alice Wong

Disfigured: On Fairy Tales, Disability and Making Space, Amanda Leduc

Every Cripple a Superhero, Christoph Keller

Exile and Pride: Disability, Queerness and Liberation, Eli Clare

Feminist Queer Crip, Alison Kafer

The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs, Leah Lakshmi Piepzna-Samarasinha

Growing Up Disabled in Australia, Carly Findlay

It's Just Nerves: Notes on a Disability, Kelly Davio

The Immortal Life of Henrietta Lacks, Rebecca Skloot

Language Deprivation & Deaf Mental Health, Neil S. Glickman, Wyatte C. Hall

The Minority Body: A Theory of Disability, Elizabeth Barnes

My Body and Other Crumbling Empires: Lessons for Healing in a World That Is Sick, Lyndsey Medford

No Right to Be Idle: The Invention of Disability, 1840s-1930s, Sarah F. Rose

Nothing About Us Without Us: Disability Oppression and Empowerment, James I. Charlton

The Pedagogy of Pathologization Dis/abled Girls of Color in the School-prison Nexus, Subini Ancy Annamma

Physical Disability in British Romantic Literature, Essaka Joshua

QDA: A Queer Disability Anthology, Raymond Luczak, Editor.

The Right to Maim: Debility, Capacity, Disability, Jasbir K. Puar

Sitting Pretty, (memoir), Rebecca Taussig

Sounds Like Home: Growing Up Black & Deaf in the South, Mary Herring Wright

Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms, Ilana Jacqueline

The Things We Don't Say: An Anthology of Chronic Illness Truths, Julie Morgenlender

Uncanny Bodies: Superhero Comics and Disability, Scott T. Smith, José Alaniz 

Uncomfortable Labels: My Life as a Gay Autistic Trans Woman, (memoir), Laura Kate Dale

Unmasking Autism, Devon Price

The War on Disabled People: Capitalism, Welfare and the Making of a Human Catastrophe, Ellen Clifford

We've Got This: Essays by Disabled Parents, Eliza Hull

Year of the Tiger: An Activist's Life, (memoir) (essays) Alice Wong

Picture Books:

A Day With No Words, Tiffany Hammond, Kate Cosgrove-

A Friend for Henry, Jenn Bailey, Mika Song

Ali and the Sea Stars, Ali Stroker, Gillian Reid

All Are Welcome, Alexandra Penfold, Suzanne Kaufman

All the Way to the Top, Annette Bay Pimentel, Jennifer Keelan-Chaffins, Nabi Ali

Can Bears Ski?, Raymond Antrobus, Polly Dunbar

Different -- A Great Thing to Be!, Heather Alvis, Sarah Mensinga

Everyone Belongs, Heather Alvis, Sarah Mensinga

I Talk Like a River, Jordan Scott, Sydney Smith

Jubilee: The First Therapy Horse and an Olympic Dream, K. T. Johnson, Anabella Ortiz

Just Ask!, Sonia Sotomayor, Rafael López

Kami and the Yaks, Andrea Stenn Stryer, Bert Dodson

My Three Best Friends and Me, Zulay, Cari Best, Vanessa Brantley-Newton

Rescue & Jessica: A Life-Changing Friendship, Jessica Kensky, Patrick Downes, Scott Magoon

Sam's Super Seats, Keah Brown, Sharee Miller

Small Knight and the Anxiety Monster, Manka Kasha

We Move Together, Kelly Fritsch, Anne McGuire, Eduardo Trejos

We're Different, We're the Same, and We're All Wonderful!, Bobbi Jane Kates, Joe Mathieu

What Happened to You?, James Catchpole, Karen George

The World Needs More Purple People, Kristen Bell, Benjamin Hart, Daniel Wiseman

You Are Enough: A Book About Inclusion, Margaret O'Hair, Sofia Sanchez, Sofia Cardoso

You Are Loved: A Book About Families, Margaret O'Hair, Sofia Sanchez, Sofia Cardoso

The You Kind of Kind, Nina West, Hayden Evans

Zoom!, Robert Munsch, Michael Martchenko

Plays:

Peeling, Kate O'Reilly

---

With an extra special thank you to @parafoxicalk @craftybookworms @lunod @galaxyaroace @shub-s @trans-axolotl @suspicious-whumping-egg @ya-world-challenge @fictionalgirlsworld @rubyjewelqueen @some-weird-queer-writer @jacensolodjo @cherry-sys @dralthon @thebibliosphere @brynwrites @aj-grimoire @shade-and-sun @ceanothusspinosus @edhelwen1 @waltzofthewifi @spiderleggedhorse @sleepneverheardofher @highladyluck @oftheides @thecouragetobekind @nopoodles @lupadracolis @elusivemellifluence @creativiteaa @moonflowero1 @the-bi-library @chronically-chaotic-cryptid for your absolutely fantastic contributions!

---

Submit a Book:

[thisthat-ortheother]

…this is actually a bunch of friendly but important reminders standing on each others’ shoulders in a poll-shaped trench coat. btw

[sunnycanwrite]

grasping what it means to be chronically ill can be hard for people, as it can be different for each person. But most of us understand chronic fatigue, days of pain that feels like it will never end, being stuck in bed, having to set reminders to take necessary medications medications. Chronic illness is not a joke. It takes time to adjust to having s chronic illness.

So don't be an asshole when your chronically ill friends cancel on you. The about of energy I use trying to take care of myself on a daily basis doesn't much left for anything else. And understand they may have different needs, completely different foods to help deal with their conditions. Mobility aids, and parking closer to buildings. I can not stress enough, please park close for them. Understand that chronic illness is exactly that: chronic.

[chronicsymptomsyndrome]

Knowing and admitting you need help is one thing

but knowing what help you need or how to acquire it or where to even start is a whole other thing entirely.

Anyone have any tips or resources for this?

[halloweeneva]

I remove my mask (ADHD) only to reveal a second smaller mask underneath (Chronic Fatigue)

[unfilteredrealities]

Pacing Tactics

● Prioritize your activities and delay, delegate or eliminate non-essential items.

● Minimize sustained physical or cognitive exertion by dividing and spreading out your activities into small segments with planned rest periods in between. For moderate to severely ill patients, even normal activities of daily living (eating, bathing, dressing) should be modified to avoid triggering PEM.

● Immediately stop and rest if you start to feel dizzy or short-of-breath, notice your heart rate increasing, or sense other PEM warning signs that might be unique to you. Don’t try to “push through” when you feel sick or tired. Although the concept is lauded in today’s society, doing so with ME/CFS will only exacerbate your symptoms and potentially worsen your illness.

● Schedule rest time (even if you don’t think you need it) to relax your body and allow for potential healing. When anticipating the need for extra energy (e.g. trip to the doctor, night out with friends, special occasion), plan extended rest time before and after the event.

● Learn to recognize emotional PEM triggers and take steps to avoid or minimize their impact. If a stressful situation is primarily beyond your control (e.g. the actions of others, world events, lack of understanding about this disease) try to take the emotion out of your thought process. Worrying or holding on to anger when you can’t do anything about a situation rarely accomplishes anything for anyone, but if you’re living with ME/CFS, it can use up your energy and cause you harm.

● Difficult as it may be, avoid the temptation to do too much when you’re feeling a bit better. It is rarely worth the consequences when living with ME/CFS.

[moondust-bard]

Would anyone be interested in a post offering tips for disabled/chronically ill writers?

Obviously, they’d be very general, as all individuals with disabilities and/or illnesses experience life differently. Still, I think a resource compiling a bunch of info like this could be helpful. This could be adaptive tech or self-created and implemented, productivity-related or not, etc.

I’ve already done something similar— a post for those who deal with executive dysfunction. I wanted to make more along this vein.

Additionally, leave your chronically ill/disabled writer hacks and advice below!

Also, feel free to share how your disabilities and/or chronic illnesses impact your writing life and what issues you specifically encounter. If I can manage it, I’ll pay special attention to researching those topics.

[triumph-of-adaptation]

slo_action / grant.ionaton

We are located in Naarm, Australia. DM to join our discord and get plugged in.

IMAGE DESCRIPTORS AND ALT TEXT

Tile 1: Bright purple text reads “WHAT IS S.L.O.?” above a dark purple illustration of a slug on a beige, textured background.


Tile 2: Bright purple text reads “S.L.O stands for SICKO LIBERATION ORGANISM” above a bright purple illustration of a snapping turtle on a beige, textured background.


Tile 3: Bright purple text reads “SICKO as in people who are chronically sick, "sick in the head", "sick freaks", or just sick and tired of living in an unjust world. We are reclaiming sickness and using our sick lived experiences to create a better world.” on a beige, textured background.

Tile 4: Bright purple text reads “LIBERATION as in liberating ourselves and each other materially and mentally from colonialism, capitalism, ableism, and oppression. we want Land Back, community-building, autonomy and empty cages- we're here to build a brighter future, not just fight against a dark reality.” on a beige, textured background.

Tile 5: Bright purple text reads “ORGANISM as in a living being that grows and changes as necessary. Organisms are non-hierarchical and interdependent, so is S.L.O. All together we want to work slow and steady: focus on sustainability and connection, and consider how we can create meaningful change at a slower pace” on a beige, textured background.

Tile 6: Bright purple text reads “who can join S.L.O.? anyone who wants to contribute to/learn from a disabled/sick/mad lead social/political group. JOIN OUR ONLINE SPACE/ COLLECTIVE NOW. a sicker world is possible.” above a bright purple caterpillar on a beige, textured background.

[forbidden-salt]

Breaking the Silence; My Mental Health Story for Worldwide Suicide Prevention Day

By ForbiddenSalt

9/10/2024

Trigger Warning: This blog post discusses suicidal ideation, depression, and mental health struggles. If you are in a vulnerable state, please read with caution, and know that support is available through resources like 988, friends, and loved ones.

Resources and helpful tools for self and loved ones provided below the fold.

My Story:

Suicide Awareness Day holds a deeply personal meaning for me. For years, I struggled silently with suicidal thoughts, depression, and anxiety, unsure of how to ask for help or whether I deserved it. Sharing my story now is not just about raising awareness, but about offering hope to anyone who feels the same weight I once carried.

At the age of 13, I began to experience something many people are hesitant to talk about—suicidal ideation. But it wasn’t until I was in college that I truly realized how dangerous those thoughts had become.

I remember one day when I was walking across campus from class to my dorm, lost in thought, and accidentally stepped off the curb without looking. A car was coming toward me. Instinctively, I jumped back, avoiding an accident. But what happened next startled me more than the near-miss. As I stood on the sidewalk, tears welled up, not because I was relieved, not because I was scared—I was upset that my instincts had saved me. I realized I wasn’t crying because I had narrowly avoided getting hit by a car; I was crying because, in that moment, I wanted to be hit. It would have been an "accident"—a way out without me having to act intentionally.

It dawned on me that this was something much more serious than I had admitted to myself.

This wasn’t the first time I had experienced suicidal thoughts, but it was one of the most shocking moments. I knew I needed help. I sought out a counselor at the campus health center and, for a time, tried therapy. When I went home for a break, I spoke to my doctor, and she prescribed me an SSRI. I confided in my family and was met with mixed reactions—some were supportive, while others expressed concerns about the medication, urging me to stop taking it as quickly as possible. This set up an internal battle for me; I began starting and stopping my medication over the next few months, caught between fear and shame; and eventually quit all together.

Suicidal ideation lingered in the back of my mind for years. I wished for a pause button, a way to make the world stop so I could catch my breath and somehow not fall behind. I dreamed of getting hurt or sick enough to be hospitalized, just so I could take a break from life’s demands. But I never let myself act on those thoughts.

It wasn’t until my mid-20s that things got so bad I returned to therapy. This time, it was different. My new therapist helped me understand that I wasn’t “crazy”—I was carrying the weight of childhood trauma and years of struggling to survive. She diagnosed me with complex PTSD, and for the first time, I felt understood. Her support gave me the strength to make significant changes in my life, including moving to a new state.

There, I found another therapist who continued to guide me through the ups and downs. I started back on an SSRI and have stayed on it ever since. Through this process, I realized that what I had been dealing with wasn’t just emotional—it was also biological. My body wasn’t producing enough serotonin, and my chronic illnesses, were compounding these mental health struggles by denying my body the tools to make its own serotonin and through the weight of the symptoms. Especially for a while before there was any answer or treatment plan in sight.

I went through EMDR therapy, talk therapy, and put in the hard work to heal. I focused on my physical and mental health, fighting for answers and for my life. Slowly, I began to reclaim control. I started to recognize the warning signs of passive suicidal ideation and created an action plan for when those thoughts creep in. I don’t go to therapy as often now, but I still have touch-base appointments in case something changes.

Through this journey, I’ve learned so much about myself and the nature of mental illness. Depression, anxiety, and PTSD were not signs that I was lazy or difficult, though I was often labeled as such. They were symptoms of a much deeper issue. I wish people could see that depression isn’t a mindset or mood and suicidal thoughts are not selfish—they are the final, fatal symptom of a disease.

It took a long time for me to accept that what I went through wasn’t my fault. I wasn’t to blame for the trauma I endured or the way my brain and body responded to it. And if you’re reading this and find yourself in a dark place, I want you to know you are not alone. I know what it’s like to stand in the darkness for so long that it starts to feel like home. But I also know that it is possible to fight back, to heal, and to find hope again.

If you can’t fight for yourself right now, I encourage you to reach out to someone—anyone—who can sit with you in your pain. Let them help you find a therapist, a doctor, or simply help with daily tasks. It might not be the person you expect. For me, one if my company leaders had noticed my depression and helped me find a therapist. I had a best friend who sat with me over the phone while I sobbed broken hearted, encouraging me to seek help if I needed it. That going to the hospital if I needed it wasn’t shameful or weak but brave and admirable. It was my grandmother, who spoke to me daily, reminding me of my faith and offering love when I couldn’t love myself and felt those I loved most didn’t love me.

Faith also played a huge role in my healing. I’ve had my share of questions and anger, but my belief that God could handle my questions and my rage helped me through some of the darkest times. I questioned why my life was going the way it was, why I was feeling the way I did, if He knows everything before it happens, if he’s all powerful why didn’t he step in to change the course of my life away from this. My questions turned to anger and I had to keep reminding myself that God had shoulders big enough for my anger, my tears, my pain. That I could toss all of it at him and he’d still see me still, love me. I never doubted his existence, and honestly to this day I still don’t have all the answers but I’m sure one day I’ll understand and I’ve realized I was still loved even when I couldn’t see it.

My family eventually came around too. Even my dad, who I had thought didn’t believe me, recently admitted how scared he had been for me after he had kept his fears hidden for years since it had gotten bad. We were able to talk and he listened, shared his point of view, and made the effort to understand. He allowed me to assure him I was safe now, I was doing better, and it’s changed our relationship for the better. While I had found my way to stability without knowing if my family believed or supported me, learning my family did care enough to worry, cared enough to learn, and loved me enough to listen even if what I said was hard to hear meant the world to me.

If you’re struggling, know that there is help out there. Call 988 for support, reach out to friends, hug your dog or cat, cling to your faith—whatever gets you through the next moment. Each day is a step, and that’s enough. It doesn’t have to be a leap—it just has to be forward.

Resources for support below:

Here are some coping strategies:

1. Box Breathing: This simple technique can help reduce anxiety. Breathe in for four counts, hold for four, exhale for four, and pause for four. Repeat until your heart rate slows and you feel more grounded. You can do this while on a video call too just let your eyes glide along the edges of the screen while you hold and breathe.

2. Straw Breathing: Another great calming tool—take a deep breath in, and then slowly exhale like you’re blowing through a straw. It mimics the relaxing response of the parasympathetic nervous system and helps you focus.

3. Journaling: I started journaling, reminding myself it didn’t have to be perfect. It was just for me. I stopped feeling guilty if I skipped days or weeks and let the words flow when I needed them. If you struggle with journaling, try creating an anonymous blog where you can rant and vent without worrying about dates or continuity. I have a separate Tumblr just for this—a void I can yell into when I need to.

4. Bilateral Stimulation: Butterfly taps—crossing your arms and tapping on opposite shoulders—helped calm me during moments of stress. This was especially useful during EMDR therapy, which became one of my strongest tools.

5. Creating a Routine: I used to go to the gym to cope before my chronic illness made it harder, so I shifted to art as a form of expression. Creating anything—whether it’s a routine or a creative outlet—can make a difference.

6. Boundaries and Emotions: Learning boundaries and reconnecting with my emotions was vital. One book that really changed my perspective was Rage Becomes Her by Soraya Chemaly, which helped me embrace my anger as a valid emotion. Learn how to advocate for yourself and establish boundaries. This takes time, but it’s one of the most empowering things you can do for your mental health.

7. Prioritize Yourself: Make time for what you need—therapy, the gym, a bath, or a doctor’s appointment. And allow yourself to rest. Your mind and body will force you to stop if you keep ignoring the warning signs.

8. Taking Shortcuts: Too tired to make a proper meal? That’s okay. Eat food however it comes—deconstructed meals are all the rage anyway. I’ve had moments where lunch was just handfuls of cheese and lunch meat. The goal is to nourish yourself, and sometimes that means being kind to yourself about how you do it.

10. Create Safety Nets: If you're heading somewhere that could be triggering, plan for it. What’s your exit strategy? Can you bring a comfort item, like a fidget toy, a blanket, or a stuffed animal? Having a plan can give you a sense of control.

11. Redirecting Negative Thoughts: When I get caught in negative thoughts, I ask myself if these thoughts are helping me process emotions or if they're just hurting me. If I’m not ready to process them, I work on redirecting my focus to something more helpful.

13. Emotional Support Animals: If you can, get an emotional support animal. My mini schnauzer has helped me through so much, even though she doesn’t know it.

How can I help a loved one:

1. Listen First: Before jumping to solutions, take time to listen. Validate the person's feelings, and let them process before suggesting how to fix things. Most of the time, they already know the solution; they just need space to work through it.

2. Stop Shaming Mental Health: Be mindful of how you talk about mental health. I’ve overheard loved ones shaming people for being "selfish" or "foolish" for being depressed, anxious, suicidal and even those that did commit suicide not knowing how often it was on my mind. Those words made it even harder to speak up and ask for help.

3. Fear and Guilt Are Not Helpful Tools: Fear and guilt are not effective motivators when it comes to mental health. I once told someone close to me that I didn’t believe people who commit suicide go to hell. Just as someone who passes from cancer doesn’t go to hell for how they died, I believe the same for depression—it’s an illness. They responded that they hoped fear of hell would keep me from acting on those thoughts. I explained that, by the time someone is ready to act, they likely don’t care anymore. The weight of the pain is overwhelming, and fear or guilt won’t pull them back.

4. Recognize the Signs: Suicidal ideation, passive suicidal ideation, and suicidal plans are all dangerous and need treatment and support. It may begin with passive thoughts like, “I wouldn’t mind if I didn’t wake up tomorrow,” but those can shift into active planning if left unchecked. Just because someone hasn’t acted on it doesn’t mean they don’t need help. Depression doesn't always look the same for everyone. It could be messy rooms, low energy, or a lack of interest in things that once brought joy. It could also look like reckless behavior, withdrawing, or joking about death. These subtle signs shouldn’t be brushed off—they’re as important as overt cries for help and worth a check as little as “hey you keep making these jokes, I just want to make sure you really are okay?” If someone is talking about feeling hopeless, giving away possessions, withdrawing from loved ones, or engaging in risky behavior, these are red flags.

5. Offer practical support: Whether it’s helping with daily tasks, providing a ride to a therapy appointment, or just sitting quietly with them, practical support can be a lifeline.

6: Encourage professional help: Gently suggest therapy, medical care, or other professional help if the person hasn’t already sought it. Be patient and compassionate, understanding that reaching out can be terrifying for them.

7. Be present: Sometimes the best thing you can do is just be there. Your physical and emotional presence can provide comfort, even when there are no words.

If you have a loved one who you worry is going through something, or has confided in you and you are worried for them. Don’t wait. Speak to them. Ask them how you can help, what’s going on, listen. If you’re afraid for them, even after they have gotten to the other side, don’t let your fears tear at you for months, tell them then listen and trust that when they say they are good, have come out the other side have an action plan for when they notice the signs - belive them. If you can’t let it go still, seek your own support. The fear of loosing someone you care about is worthy of attention. If you’re reading this because someone you love is struggling with suicidal thoughts, thank you for caring. Supporting someone with suicidal ideation can be incredibly difficult, but your presence matters more than you might realize.

If you or someone you love is struggling, find Resources for Support:

1. National Suicide Prevention Lifeline: Dial 988 for immediate help in the U.S. Available 24/7.

2. Crisis Text Line: Text HOME to 741741 to connect with a trained crisis counselor.

3. The Trevor Project: Focused on supporting LGBTQ+ youth, The Trevor Project offers crisis intervention and suicide prevention services. Text START to 678678 or visit their website.

4. NAMI (National Alliance on Mental Illness): NAMI provides free, confidential support for mental health concerns. Call the NAMI Helpline at 1-800-950-NAMI or text NAMI to 741741.

5. The Jed Foundation: Focused on mental health support for teens and young adults, the Jed Foundation works to protect emotional health and prevent suicide. Visit jedfoundation.org for more information.

6. The Veterans Crisis Line: Veterans and their loved ones can call 988 and press 1 or text 838255 for confidential support. Available 24/7.

Suggestions for Keeping Yourself Safe:

1. Create a safety plan: Write down a plan for when suicidal thoughts occur. This could include calling a trusted friend, therapist, family, distracting yourself with an activity you enjoy, or going to a safe place where you can feel grounded and making an appointment with your doctor.

2. Reach out to a support network: Whether it’s friends, family, or a therapist, let someone know how you’re feeling. It’s important not to isolate yourself when you’re struggling.

3. Remove means: If you’re feeling unsafe, remove items that could be harmful or ask someone you trust to hold onto them temporarily. There is no shame in this ever.

4. Practice grounding techniques: When suicidal thoughts take over, try grounding yourself with techniques like deep breathing, focusing on your senses, or engaging in mindfulness exercises. These can help bring you back to the present moment. Call on your faith if you need to to get by, play with your pet anything to help you get grounded and move through the feeling

5. Remember that feelings pass: In the heat of the moment, it can feel like the pain will last forever. But emotions are temporary, and feelings—even the darkest ones—eventually pass. That feelings are normal and natural and have no moral judgement, feel it, acknowledge it, and let it move through knowing another feeling will come your way take its place.

Recovery isn’t pretty, and life isn’t perfect; but you are worth fighting for.

[rthritis]

Energy Conservation Techniques; Home Management

Meal Preparation

Gather all items first and, if possible, sit during prep

Keep frequently used items within arms' reach

Use light pots, pans, and dinnerware

Use adaptive equipment, such as jar openers, to make tasks easier

Make extra portions and save in freezer containers to conserve energy during the rest of the week

Make a Bed

Purchase light weight coverings (e.g. down comforters)

Complete one side of the bed before walking to the other side

General Cleaning Tips

Look for cleaning equipment with long handles

Try to limit cleaning to 1-2 rooms per day to shorten your activity time

Be sure to take frequent breaks and rest if you feel tired

Vacuuming

Consider keeping one vacuum upstairs and one downstairs

Check your posture while vacuuming to assure good body mechanics

Cleaning Windows

Use long handled equipment, such as a squeegee

Clean only one room of windows per day

Mopping

Use a self-wringing mop

Mop small sections at a time

Dusting

Purchase a long-handled duster to reduce strain on your arms

Use a light weight floor duster

Organizing Items

Get a rolling cart to transport things around the house

Keep a trash receptacle in every room to avoid walking far to discard trash

Sort items into small bins to transport to preferred locations

Kitchen Cleaning

When doing dishes, soak your dishes before washing them

Use sponges or small dish rags that are easy to wring out

Let your dishes air dry or use a dish washer

Consider using paper plates, cups, and napkins

Use small spray bottles that are light weight

When possible, sit while cleaning or sorting items

Clean one shelf of your refrigerator per day until complete

Bathroom Cleaning

Keep cleaning products in a small bucket

Use light weight, long-handled brushes

Let the cleaning product soak in the sink, bath tub, or toilet bowl

Spray and clean surfaces one section at a time

When possible, sit on a high stool while cleaning

Keep counters clear of clutter

[kaonarvna]

I finally did it: I found the spoons to make an actionable (and semi-gameified) visual representation of spoon theory that I can actually use.

I've been thinking about doing this for months, and I've posted about it once or twice.

But, I finally did it, I made these bad boys for myself:

I have Hypermobile Ehlers-Danlos Syndrome. Which is to say, my body is very poorly held together, in a lot of pain, easily exhausted, and easily injured. I'm at the point now where I've had every intervention under the sun, nearly a decade of physio, we've found the best pharmacological interventions for me, and...we just have to get by. It's hard, it is, but it's the only mode of existing I know.

Maybe it's because I'm an aphantasiac, maybe it's because I'm (more than) a bit neurodivergent, but spoon theory has always been a little too abstract for me. I grew up on JRPGs (cough final fantasy has me in a choke hold), so putting things into just...stat bars and a table of effects, items, etc is more accessible to my fatigued, pained little brain. This is familiar. This makes sense to me.

Who needs an arbitrary amount of spoons, when you can have 200 HP & MP?

There's twenty notches in between the bars, so I can more accurately knock off health/mp as it ticks down. I teach in a primary school (children who only come up to my hip, mostly!), so you bet I've printed and laminated these, and have them slapped up somewhere I can easily see and access with velcro. If I can't see it? It doesn't exist. I can easily use a dry erase marker to take off my health/mp as I self-evaluate through the day, and start fresh the next.

「 As of this post going live, I've been using this for about a week! The MP drain seems accurate to life give or take, and the HP bar has been a good representation of just...the state of mess I'm in. There are injuries and "real life debuffs" that aren't on the list, but -20HP/-20MP has been a safe bet for those. The A4 is for at home, and one of the A5s follows me to work/out and about in my BUJO! 」

And it's not perfect, of course it's not! I'll probably tweak my board in a month or two. But, maybe just having a list of the things I can do to help myself right in front of me will help. Maybe, being able to show it to my spouse will help them help me better. It's worth a try. Bullet journalling and visual timetables are lifesavers, but they can only communicate so much at once.

I've made a blank version, in the event anyone wants to download it and fill it in for themselves.

This link should let you access a view-only version in canva. I'd imagine you should be able to make a copy and do it yourself! If not, don't hesitate to let me know and I'll try to find a workaround.

Hopefully this might help one or two busy-brained people like me manage their energy and pace their bodies a little bit better. Or, at the very least, give them a starting point for making their own resources.

[sunnycanwrite]

growing up was odd when no one believed half the things I said. And it was all because I knew something was wrong as a kid. That it wasn't growing pains, that my leg was not working the way it was supposed to. I developed a limp, began to fall over constantly, became tied to my bed

I already have a list talking about the experience of being ignored by doctors. But this is about mobilty aids, and gut feelings. Follow them. It will help you so much in the long run, really. When my falls became frequent I knew I needed support. My family didn't understood.

But I ordered a folding cane. And there it was the ability to go out and have support. Than each time I needed another mobility aid there was that same gut feeling. I was in pain, my body was weak, I needed extra support. Now my most recent, my wheelchair is a discounted standard chair, that I had to modify to have a low back, no arm rest etc. Don't feel bad if you buy mobility aids second hand, get them donated. Being able to take the step to get them is so fucking brave.