Books used to come in one form: paper. Now there are so many different ways to consume them! Here’s a quick look at how The Things We Don’t Say: An Anthology of Chronic Illness Truths will look on tablets, phones, and Kindles! To be the first to get access to the anthology both in paper and digital formats, be sure to sign up on the home page.
It’s time to share a few poignant quotes from the book. This is a small sample of the warm, sad, joyful, heartbreaking, insightful content you will find in the full book. For the complete list of essay titles and author biographies, simply scroll down this page. Then sign up on the home page to be the first to learn when The Things We Don’t Say: An Anthology of Chronic Illness Truths will be available.
“Does this count as a chronic illness?” When I asked people to contribute essays for this anthology, I was shocked the first time someone asked me this. By the fifth time I was no longer shocked but still saddened. The fact that so many of us doubt the legitimacy of our health situations due to our stigmatization and erasure by society is exactly why this book is necessary.
I wept in that stark, cold room. I wept in my hot car. I wept all the way home. I wanted to escape. I didn’t want to share my devastating news. I wanted to go back to sixth grade, back to the prom, more self-assured and able to attract the popular boys, marry my high school sweetheart. Then this news wouldn’t be so horrible. We’d have had thirty years of healthy, loving sex and this news wouldn’t shatter our dreams like a crystal flute crashing onto a marble floor.
I trembled when I told my husband. He smoothed wet curls away from my face and his. The failure of my body made me feel that I didn’t deserve him. I didn’t deserve to be loved. But he held me in his arms and rocked me like a baby
[My three daughters] help me find the strength to wake up every morning, fight back the dark thoughts of depression and death, or slow down the speed of my thoughts when mania hits. When either struggle comes to the forefront, my thoughts seem to get very loud with either darkness or activity. I have a hard time coming out of those thoughts; I get stuck and obsess over the speed and darkness of my thoughts. Things may be hard in my mind, and then one of my girls will ask for a hug or a kiss and I am here again. I am with them, maybe not for long, but for that moment, I can breathe. If even for just that moment, I am free.
A moment may not seem like much, but when the dark days and the manic days string together in a necklace of unending struggle, those moments become something to live for, they become little bits of light in a mind of darkness and struggle. And ’ll take it; I’ll take every moment of hope, every bit of distraction, every ounce of my friends’ and family’s love to get through this thing called chronic illness. I’ll take it.
There’s this dichotomy about illness, a dangerous one that exists in our society, where you are either 100 percent well or 100 percent sick, and if you’re sick, then you stay out of view until you’re 100 percent well again, like Holcomb. And that’s bullshit. A lot of us aren’t 100 percent well, but we’re fine, and we’re living our lives as best we can. Rather than living a false life to make others feel better, we tackle it full on, knowing there will be good days, great days, bad days, and awful days, but through it all we are still ourselves. I am still me, and not defined by my keratoconus.
What have I learned through all of this is my masculinity, my manhood, must be malleable like my overall pride. They all become a luxury at a certain point, with necessity dictating when to bend and adapt. Part of my personal growth has been to stop fighting my back issues like a man “should,” and just let go of any expectations from my body. A local chronic pain group helps, but it took me months to swallow my male pride and walk through the door. The few guys who show, much outnumbered by women, have expressed many of the same feelings as their own personal abilities and dreams were altered by chronic pain. The strong male oak must become a flexible willow.
Men do not have to take pain and challenges stoically, especially when they simply cannot. We must let go of all those age-old stereotypes and expectations. We need to not get angry when our friends complain of a sore back after golfing or hiking; it’s a poor attempt to commiserate but an attempt nonetheless. Using a cane or butt-cushion is not a sign of weakness, just adaptation. Leaving a group early because you can’t sit any longer is not a sign of weakness, nor is pulling the social plug completely some days to just try and get through the day and night.
I have little to prove as a man at this point in my life. Rather, I’ve let go of my old manhood and masculinity dogma, and my new goal is to ride this out gracefully and hopefully with a sense of humor.
The cover has finally been revealed! Enjoy this pre-publication view, then scroll down to check out the titles of the stories and the authors’ biographies. Sign up on the home page to be the first to find out when The Things We Don’t Say: An Anthology of Chronic Illness Truths will be available.
It’s time for an advanced peek at the titles that will be in The Things We Don’t Say: An Anthology of Chronic Illness Truths! Check them out below, then scroll down to learn about the authors.
Introduction | Julie Morgenlender
Part 1 | Relationships: Family, Friends, Dating, Sex
A Flash of Blue | Shelia Bolt Rudesill
To the Friend Who Told Me that I Talk About My Illnesses Too Much | R.S. Nash
Yes, We Can: Sex and Chronic Illness | Kit Stubbs, PhD
Multiple Sclerosis: My Lost Connections | Sónia Lopes
This I Believe | Marcia Allar
One-Two Punch | Charity Cole
Part 2 | Experiencing the Emotions
Imagine | Michaela Shelley
This is Hard | Julie Morgenlender
I Didn’t Cry on My Birthday This Year | Tara A.
Chronic Contradictions | Wendy Kennar
Expecting Motherhood, Creating Self | Sarah Myers
Adventures in Snow Shoveling: January 9, 2016 | Danielle Lorenz
I Am Not My Cornea | Keidra Chaney
PTSD: The Illness I Couldn’t See | Amy Oestreicher
An Echo Unheard | Deepti Dilip Kumar
Part 3 | The Medical Side: Diagnosis, Treatment, Doctors & Hospitals
Pain | Heron Greenesmith
Going to the Emergency Department with a Chronic Illness | R.S. Nash
Miss Treated | Katherine Ernst
“. . . Sixteen, Seventeen, Eighteen . . .” | Katie Hiener
The Tale of a POTSie | Bella
Chronic Illness Eugenics | chaya hazel caninsky
Pudendal Neuralgia | Atara Schimmel
The Monster Within | Annie Wittenberg
Part 4 | Acceptance: For Better or Worse
Good Morning | Kaitlyn M. Smith
Snakes & Accessibility Ramps | Alix Penn
Anxiety Is My Constant Companion | Devin Reynolds
What Is It Like? | Hannah Rembrandt
Forgive Yourself for Saying No | Glynis Scrivens
Forgive Yourself for Saying Yes | Glynis Scrivens
Grieving the Loss of Body | Bret Stephenson
The Superior Mutant’s Victory Garden | Raven Kaldera
Growing Up with Asthma | Mark Ludas
Part 5 | The Things We Wish We’d Known
Things Every Newly Diagnosed Patient Needs to Know | Dylan Gomez
Wishing I Had a Heads-Up on My Autoimmune Illnesses | Jamie Jasinski
Along the Way | Dess
I Wish I’d Known | Zoe A. Bateman
If I Had Known Then, What I Know Now… | Marcia Allar
Part 6 | What We Wish Folks Knew
Chronically Ill Teens | by Michaela Shelley
All About the Pain | Nikki Albert
That’s Why the Lady Was on Stamps | Litsa Dremousis
The Things That Go Bump…In Your Body | Lindsey M. Clouser
The Quandaries of Chronic Pain | Elin Walther
A Little Understanding | Mary Lee Evelyn Keeney
Part 7 | Others’ Perceptions
No Different from Anyone Else | Glynis Scrivens
Chronic Pain Versus Masculinity | Bret Stephenson
The Importance of Representation: Why Using My First Cane Was Scary | Rebecca Bartlett
Hope’s Visible in Me: How My Invisible Illness is Actually Visible | Jessica Ward
High-Maintenance | Lindsey M. Clouser
We Don’t Get Any Medals | Jane Lesley
My Journey for Answers: Because No One Will Care More about My Health Than Me | Julie Morgenlender
One thing that makes this anthology special is the many voices that contribute to it. Having many perspectives by having multiple authors, each sharing their own personal stories adds richness and variety. So who are these 42 amazing authors who wrote the 50 stories included in the anthology? Check out each author, where they’re from, and their short bio, which will appear in the book with each of their stories. The authors are listed here in alphabetical order by first name and some are linked to their websites and social media profiles.
London, United Kingdom
Alix is a stereotypical geek focused on history, musical theatre, and disability activism. She’s lived with chronic pain and disability for over twelve years, and resides in London with a dog, six fish, and a walking stick.
Westport, Connecticut, United States
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, writer, and health advocate. She’s contributed to over seventy online and print publications, and her story has appeared on NBC’s TODAY and CBS. She is the creator behind the #LoveMyDetour campaign to help others cope in the face of unexpected events, which is the subject of her upcoming book My Beautiful Detour (2019). Amy is a yogi, foodie, and general lover of life. Learn more: amyoes.com.
Greensboro, North Carolina, United States
Annie Wittenberg lives in Greensboro, North Carolina, where she is currently earning her master’s degree in clinical mental health counseling. As a future counselor, Annie hopes to support and empower people who are battling chronic mental health conditions. Annie finds daily joy in cuddling her sweet puppy, May, connecting with friends and family, and spending time outside.
Newton, Massachusetts, United States
Atara Schimmel can be found painting, singing, and writing poetry. She is a lover of nature, finding solace with the animals and by the ocean. She continues to heal herself through creative expression daily.
Youngstown, New York, United States
Bella is a graduate student studying social work, who is living with glycogen storage disease type XI, autonomic neuropathy, dysautonomia (POTS and vasovagal syncope), Raynaud’s, and gastroesophageal reflux disease. She has a blog where she writes about living with these conditions, and she also contributes to The Mighty. Her ultimate goal is to work as a social worker in a hospital setting. She would like to use her experience in dealing with chronic illness to help and support others suffering from acute and chronic disease.
Reno, Nevada, United States
Before back and neck problems forced Bret onto disability benefits, he specialized in high-risk teenagers for almost thirty years, particularly gang youth. Three back and neck fusions unfortunately pulled him out of that work, but he keeps a few projects going through the pain. Bret is the author of From Boys to Men: Spiritual Rites of Passage in an Indulgent Age and The Undercurrents of Adolescence: Tracking the Evolution of Modern Adolescence and Delinquency Through Classic Cinema. After twenty-six years in Lake Tahoe, Nevada, Bret is back in his hometown of Reno, Nevada, to get out of the snow!
Royal Oak, Michigan, United States
Charity Cole is a stay-at-home, homeschooling mom that shares her story of living with chronic illness in hopes of encouraging other parents that you can live and parent well while facing ongoing health challenges. She blogs about faith, family, homeschooling, and chronic illness at gigglesandgrimaces.com.
chaya hazel caninsky
Boston, Massachusetts, United States
chaya hazel caninsky lives in Boston, MA. She works as a disability justice community organizer and hopes to get a herding dog soon. If this piece resonated or you have had similar experiences, feel free to share them with Chaya at email@example.com. She likes reading reflections even though she often can’t respond.
Edmonton, Alberta, Canada
Danielle Lorenz is a PhD candidate in the Department of Educational Policy Studies at the University of Alberta in Edmonton, Alberta, Canada. Her academic work focuses primarily on how indigenous and settler relationships manifest within Alberta’s K-12 education system. Born with a congenital condition and developing others shortly after the onset of adulthood, Danielle’s experiences as a chronically ill cis woman have affected how she sees herself within her scholarship as a settler on indigenous lands.
Deepti Dilip Kumar
IAS Colony, Bangalore, India
Deepti Dilip Kumar is a school teacher by day and writer, reader, and dreamer by night. While teaching children is her passion, she loves to study more about history, sociology, and the intersections between psychology and teaching. She enjoys fiction that deals with the new generation and their voice, and is particularly interested in journeys, both inward and personal, as well as outward and exploratory in nature.
Savannah, Georgia, United States
Dess lives in Savannah, Georgia. She loves to read, try new recipes, and watch Netflix.
Cedar Falls, Iowa, United States
Devin Reynolds lives in northeast Iowa with two roommates and three ornery cats. He dabbles in video game design and is working on a full-length fantasy novel.
San Jose, California, United States
Dylan Gomez is a chronically ill nineteen year old who wrote this piece while in a hospital bed for many months. In their free time, they enjoy filmmaking; reading comic books; volunteering and fundraising for the Crohn’s and Colitis Foundation of America; and writing relatable (and sometimes humorous) content on their personal blog to help people who are also suffering from chronic illnesses feel understood and to give them a laugh. Dylan hopes to soon complete a film with Baykids Studios that will talk about what it’s like to live with inflammatory bowel disease.
Elin Walther is a twenty year old living with fibromyalgia, Raynaud’s syndrome and joint hypermobility syndrome. She loves video games, her two dogs, and updating her friends with spontaneous observations about odd things that happen in her day. She chooses to believe they love it much more than they actually do. She is currently working toward a bachelor’s degree in development studies at Lund University.
Brisbane, Queensland, Australia
Glynis Scrivens is an Australian writer of short stories and magazine articles. Her book Edit is a Four-Letter Word includes what she has learned about the writing process. Glynis lives in Brisbane, Queensland, Australia, with her family, two dogs, a Himalayan Persian called Mr. Floof, nine chickens, three ducks, and goldfish. She can be found at glynisscrivens.com.
Uniondale, New York, United States
Hannah is a graduate student studying speech-language pathology. She has fibromyalgia, rheumatoid arthritis, and lupus, and feels that these are an integral part of who she is and who she will become. Hannah looks forward to her future and is excited to be on the path she is currently on. Hannah is a generally happy person both because and in spite of her illnesses.
Boston, Massachusetts, United States
By day, Heron Greenesmith is a policy attorney for LGBTQ+ people. By night they write fairy tales and do crosswords in between episodes of murder mysteries. They live with their little family in Boston, Massachusetts.
Westville, New Jersey, United States
Jamie Jasinski is from New Jersey and loves every minute of being a dog mom to her rescue pup that supports her emotionally. She has been diagnosed with rheumatoid arthritis, Sjögren’s syndrome, and fibromyalgia. She writes about her experiences with these autoimmune diseases and advocates for those living with chronic illness. You can follow her on her personal journey by visiting her blog at theautoimmuneblues.wordpress.com.
Newcastle Upon Tyne, United Kingdom
Jane Lesley is a retired social worker living in Newcastle, United Kingdom. She has been living with Crohn’s disease for over forty years but has moved her home between three continents nonetheless.
Newark, New York, United States
Jessica Ward is a twenty-something lover of coffee, art, and history. She is learning how to thrive while living with chronic illness.
Julie Morgenlender (editor)
Concord, Massachusetts, United States
Julie Morgenlender is a friend, daughter, aunt, crocheter, reader, creator of this anthology, and so much more, despite being unable to work full time. She enjoys walking in the sunshine, petting dogs, and spending time with awesome people. She volunteers for her chronic pain support group and is on the board of directors of the Bisexual Resource Center.
Kaitlyn M. Smith
Gray, Tennessee, United States
Kaitlyn M. Smith is a recent psychology graduate currently working in mental health case management. She lives with two cats, a husband, and way too many plants. In her free time, she enjoys writing a little bit of everything—including fantasy, poetry, and narratives about life with chronic illness.
Cheltenham, Pennsylvania, United States
Katie Ernst is a writer and attorney who is passionate about the intersection of feminism and health care. Her website, Miss Treated, collects stories of women who have been dismissed or demeaned by doctors. Follow her on twitter @MissKatieErnst
New Milford, Connecticut, United States
Katie Hiener loves playing with written words. Penning for online sites and magazines, Katie is also a storyteller, an animal welfare proponent, a psychology buff, and a connoisseur of fine pizza.
Chicago, Illinois, United States
Keidra Chaney is a writer and musician based in Chicago.
Kit Stubbs, Ph.D.
Somerville, Massachusetts, United States
Kit Stubbs, PhD, is a non-binary/queer/femme roboticist, maker, and entrepreneur who is more interested in people than in technology. Kit earned their PhD in robotics from Carnegie Mellon University and later founded the Effing Foundation for Sex-Positivity (effing.org), a 501(c)(3) nonprofit whose mission is to reduce sexual shame by fostering sex-positive art and education. They blog about technological empowerment for sexuality and pleasure, including their experiences and creations, at toymakerproject.com. Kit also co-organizes teasecraft-boston, a meetup group for sex/kink-positive crafters (teasecraft.com)
Lindsey M. Clouser
Wilmington, North Carolina, United States
Lindsey M. Clouser lives in Wilmington, North Carolina, with her border collie Davie. She works in finance and in her spare time likes to draw and paint.
Seattle, Washington, United States
Litsa Dremousis is the author of Altitude Sickness (Future Tense Books), which Seattle Metropolitan Magazine named one of the all-time “20 Books Every Seattleite Must Read.” Her essay After the Fire was selected as one of the “Most Notable Essays 2011” by Best American Essays, she’s a contributing editor at The Weeklings, and The Seattle Weekly named her one of “50 Women Who Rock Seattle.” She’s an essayist with The Washington Post and her work appears in a myriad of publications.
Newton, Massachusetts, United States
Marcia Allar lives with reflex sympathetic dystrophy, chemical sensitivities, Ehlers-Danlos syndrome, and osteoporosis. She was an oncology head nurse and then a trial attorney for severely injured people in Boston, Massachusetts. She now provides environmental counseling regarding healthy homes, nontoxic products, clean water, and safe foods. She lives in Newton, Massachusetts with her beloved dog, Sophie, and is the mother of two adult children, Sarah and Ben.
West Orange, New Jersey, United States
Mark Ludas is a published author, accomplished actor and musician, and a blogger on a wide range of subject matter. He is also a private personal trainer in northern New Jersey and a lifelong copy editor, currently working in that capacity for Jerrick Media Holdings, Inc., in Englewood, New Jersey.
Mary Lee Evelyn Keeney
Baltimore, Maryland, United States
Mary Lee is a twenty-something Baltimore native and a passionate patient advocate. A chronic pain patient with a degree in fine arts, she uses her experiences to create. Her hobbies include anything from photography and design to spending time with her dogs.
Spartanburg, South Carolina, United States
Michaela Shelley is a college student living with mitochondrial disease. She writes about her and her brother’s experiences with the disease on her blog: ChronicallyAwesome23.blogspot.com.
Leduc, Alberta, Canada
Nikki Albert is forty years old, living in Alberta, Canada, and lives with a few invisible illnesses. She attained her master of arts in philosophy from the University of Alberta. She enjoys writing fiction and nonfiction as well as blogging. She runs her own blog, the Brainless Blogger, and Facebook page, Making Invisible Disabilities Visible.
Melbourne, Victoria, Australia
R.S. Nash is a twenty year old from Australia living with multiple chronic conditions. She likes to advocate and raise awareness through art and writing, and is passionate about helping reduce stigmas surrounding chronic illnesses.
Hubbardston, Massachusetts, United States
Raven Kaldera is a Superior Mutant living on a little homestead farm in Massachusetts with his polyamorous family, most of whom are also Superior Mutants in various ways. He is a shaman, a spiritual teacher, the author of thirty-nine books, and struggles every day to be a better person.
Crete, Nebraska, United States
Rebecca Bartlett has a degree in English and has worked in journalism and freelance writing. In her free time, Rebecca enjoys writing poetry, playing video games, and volunteering. She lives in Nebraska with her fiancé and husky mix. She writes under the pen name RL Bartlett.
Chicago, Illinois, United States
Sarah Myers is a graduate student studying thanatology. They hope to work with the LGBTQIA+ community as a grief counselor. In their spare time, they write, read, and watch more horror movies than strictly necessary.
Shelia Bolt Rudesill
Pittsboro, North Carolina, United States
Shelia Bolt Rudesill is an accidental writer. For forty-five years of pediatric nursing, she dedicated her personal life to the well-being of children. Her writing began at age fifty when she was encouraged to write about her experiences and about those burdened with unreasonable hardships. Since then she has authored five novels and several short stories.
Sónia Lopes lives in Lisbon, Portugal, and has been working in publishing for over a decade. Among some of her passions are contemporary dance, writing, and traveling, but mostly she’s just happy to spend time with close friends and family and enjoy a glass of red wine.
Alexandria, Virginia, United States
Tara A. is navigating life with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and lives in Virginia with her husband and dog, Ellie. She loves to spend time with her friends and family, relax with Ellie, make jewelry, and enjoy as much time at the beach as possible.
Los Angeles, California, United States
Wendy Kennar is a mother, freelance writer, and former teacher. Her writing is largely inspired by her nine-year-old son and from the experiences of her twelve-year teaching career. Wendy’s personal essays have appeared in a number of publications, both in print and online. You can read more from Wendy at www.wendykennar.com.
Zoe A. Bateman
Reading, United Kingdom
Zoe A. Bateman is a British author. She is usually found trying to hug her cats or finding creative ways to do physio exercises.