Yes, I’m Still Sick: Writing with Chronic Illness
By Sarah McCoy | February 26, 2019 |

A friend texted me the other day while I was lying on my back under the glaring light of my dental surgeon’s chair.
How are you?
I’m still sick. [Attachment: photo of me on laughing gas.]
You have had the (poop-emoji-est) January ever!
[Interpret ‘poop-emoji-est’ as you wish: wasteful, crap-natious, grossest, unbelievably garbage, and so forth.]
It made me lopsided smile through the dental dam, needles, drills, suction, and mind-altering medications. Because she put it quite right. It has been a doozy of a winter.
If you would permit me a moment of painful honesty and at the risk of exposing myself to be less than super-powered, super-positive, super-super Sarah:
I have Celiac Disease, a severe gluten allergy. I was diagnosed in 2002. For the most part, I have it well controlled with diet, exercise, and strict precautions. That said, it’s a lifelong autoimmune disease that has weakened my body’s ability to fight off most passing viruses. I try to keep as far from infectious disease as possible. Hard to do, right? Even harder when you’re a traveling author handshaking, hugging, and sharing meals with reader friends and strangers. Needless to say, I catch things. But never has it been like the winter of 2019.
In the spans of five weeks, I contracted a malicious fever virus, followed by an upper respiratory flu that turned to bronchitis; paroxysmal coughing from infected airways put me on an inhaler all hours of the day and night, unable to sleep, to breathe, to speak, and producing extreme exhaustion, dehydration, and medication induced GI distress. In the midst of this, I could not put off having planned dental surgery: a tooth abscess and a number of cracked teeth. I stress grind… a lot. All of this. In five weeks. That was just the physical. Emotionally, I hit a major low, which was more debilitating than the illnesses.
I didn’t feel like getting out of bed some mornings. I didn’t feel like getting in bed some nights. What was the point? I was miserable either way. Never before had I experienced such an out-of-body pessimism. I couldn’t read: it hurt my eyes. I couldn’t write: it hurt my head. I couldn’t watch movies: too loud! I couldn’t go outside: I’d catch my death of cold. I couldn’t get warm inside: shivering with fever. There were moments at my writing desk when all I could do was cradle my teacup and close my eyes; block out everything else, remove myself from reality, and float in the nothingness.
In the midst of one of those dark moments, I began to think about writers with chronic illnesses. No, I became obsessed with them. It seemed the only Internet search for which I had the strength. I wanted to know their stories. Because I could not imagine if my malaise and suffering continued for months, years, even decades. What I found gave me a whole new respect for many of my favorite authors; men and women who silently bore lifelong diseases, pushed through the depression that comes alongside of extended illness, and created powerful art.
Here are a handful of the many, living and gone, who exemplify endurance and inspired me to speak up about the realities of being a chronically ill, flawed, less than super-powered, human.
April Gibson, poet, essayist, and educator. April writes eloquently about her Crohn’s Disease, an inflammatory bowel illness that affects the digestive tract. April’s colon was surgically removed due to the disease. Instead of hating her body for being weak, she honors it for how much it has overcome: “It holds together my bones and blood, and for this I am grateful, for understanding the nature of body through the form of my own, realizing just how much it fights and chooses, how much it wants to live.”
Laura Hillenbrand, lauded author of Seabiscuit: An American Legend, and Unbroken: A World War II Story of Survival, Resilience and Redemption, which were both made into blockbuster films. She bravely sat down with the New York Times to discuss her battle with chronic fatigue syndrome. “I don’t remember what it’s like to feel well,” Laura admits. “I’m 43. I was 19 when I got sick. It’s a lifetime ago. It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.” It’s a powerful message of perseverance: not to excuse weakness but to make it our strength and write from that place.
James Joyce, Irish novelist who penned Ulysses, A Portrait of the Artist as a Young Man, and Finnegans Wake. He suffered from venereal diseases, eleven barbaric eye surgeries, and chronic autoimmune illness. In the end, he died of a perforated stomach ulcer. Yet, reading his work, would we guess how much he privately suffered? “Welcome, O life! I go to encounter for the millionth time the reality of experience…” He wrote. “Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age.” It seems to me that one reason he may have written of heroic transcendence, perseverance, and humor was to combat the physical realities of his pain.
Porochista Khakpour, the critically-acclaimed author of Sick, The Last Illusion, and Sons and Other Flammable Objects. Her memoir Sick is a poignant recounting of debilitating, undiagnosed symptoms of Lyme Disease. Porochista underwent years of being poked, prodded, pricked, and sometimes even dismissed by physicians far and wide; all while continuing to write, publish, book tour, and being a public figure. In Sick’s epilogue, Porochista writes that it is “a story of triumph, of how a woman dove into the depths of addiction and illness and got well. She got herself better. She made it. The Book I Sold might even imply you can do it too. Or anyone can.”
George Orwell, English novelist of Animal Farm, Nineteen Eighty-Four, and other writings for which Time magazine named him one of the all-time greatest British writers. He struggled to breathe every day of his adult life. A severe case of juvenile bronchitis left his bronchial tubes permanently damaged. He habitually battled pneumonia before dying of tuberculosis. Famously quoted as saying, “Writing a book is a horrible, exhausting struggle, like a long bout with some painful illness.” Knowing his medical history, he clearly understood incessant suffering.
Nafissa Thompson-Spires, author of National Book Award long-listed Heads of the Colored People. In the Paris Review, she wrote about her chronic struggle with endometriosis, an excruciating female disorder in which abnormal tissue grows outside the uterus. Nafissa continues to struggle with the disease to this day. She does not flinch from the details of her pain nor does she want us to. “The other bright side of my pain,” she explains, “is that I have all these stories to tell, and I’m telling them…” I, for one, am so glad she is.
Esmé Weijun Wang, author of The Border of Paradise, The Collected Schizophrenias, and the writers’ blog “The Unexpected Shape.” Esmé is a leading voice for writers struggling with lifelong illness. After years of infirmity, she was diagnosed with schizophrenia and late-stage Lyme Disease. Her dedication to bringing understanding and empathy to chronic disease is one of the most powerful today. “These conditions create boundaries for my life;” she explains, “they also inspire me to guide and support others who are dealing with difficult times.”
This winter has reminded me that we are flesh and bone, spirit vapors on earth for a time and then gone. That fact doesn’t make me anxious or sad; it frees me to live bolder. I needn’t maintain a façade of immortal stamina. Being of perfect condition isn’t what produces legacy. It’s the story of our refusal to be conquered by adversity, even those that come from within.
If you battle a chronic illness, please know, you are not alone. There is a community of writers here who understand and support you.
[coffee]
Sarah, I’m so sorry you’ve had such a difficult winter. I pray you will be better. Another chronic sufferer here and it’s been so inspiring to read others’ stories–thank you for taking the time to share your list. I take much comfort from the Angelic Doctor: https://vijayabodach.blogspot.com/2016/01/coping-with-pain-and-sorrow.html
Btw, I don’t mean to be giving advice, but I found a couple of great resources and perhaps they might be of help to you as well: https://vijayabodach.blogspot.com/2018/11/chronic-conditions-and-healing.html
Thank you, kind-hearted Vijaya. Your links were so helpful and uplifting. It’s amazing to hear how very many of us (chronic illness sufferers) there are. Why aren’t we talking more about this? Sharing our struggle makes the successes even more meaningful. I celebrate you and your daily victories, Vijaya!
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Celiac! Dental work! Hoo-boy, that’s a lot. I’m a lucky-healthy one, but I’ve known too many burdened by various conditions.
How inspiring is this post, then. Talk about write on! However, there is another reason to do so. Countless readers have been helped through illness, hospital stays and tragedies by reading. Clients show me letters and e-mails to that effect all the time.
Therapists have prescribed reading fiction for trauma victims, those with low empathy and so on. The benefits are real and proven by science.
When you write on you are not only helping yourself, you are helping others. A salute and hug to you, Sarah.
Dear Don,
I receive your hug and thank you for it! Always a pleasure having you join in on the conversation. I pray you experience all health and happiness as this brutal winter blooms to spring.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Thank you for your raw honesty, Sarah. It gives others permission to speak up.
I love this: “We’re all sitting in our particular circumstances and writing from that place.”
Barbara dear,
You are too kind. I was reluctant to talk about my chronic illness but thought, if I don’t, who will? Also, these featured authors deserve to be championed for their bravery. Their words encouraged me to be open and vulnerable. I hope they help other writers to feel confident doing the same. Thank you!
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Not to make light of your problem, but texting while lying on your back during dental surgery also speaks volumes.
Ha, you are very right. The iPhone is its own kind of chronic illness. I was checking my messages one last time before the Novocaine and gas took effect. My dentist encouraged me to do so knowing I’d be “out” for the next 4.5 hours.
Thanks for reading and take care of yourself, Ray!
Yours truly,
Sarah
http://www.sarahmccoy.com
Sarah, your post is inspiring on so many levels. Last night I watched ‘The Theory of Everything’ and found myself in awe, not so much of Stephen Hawking’s brilliant theories, but of his ability to do his work in spite of his physical challenges. You and he and all the others on your list are nothing short of heroic. I wish you well.
Dear Susan,
I love that film. I’m a bit fanatical about all bio-dramas (historical fiction, really) that reflect the genuine, human struggle to overcome adversity in superhuman ways. The strength of the human spirit inspire me to push a little harder, go a little farther, don’t give, don’t give in… I hope it does for others, too.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
I hope things look up for you soon. Autoimmune disease abounds in my family, and I know it is not easy. Add on seasonal disease and then dental work, too? You probably deserve a perseverance medal or something!
I’d never really thought about chronically ill writers, although I knew vaguely of some. I appreciate the selection you listed here today. Their stories are inspiring. Thank you.
Dear Lara,
Such a pleasure to hear from you. Coming from a family of autoimmune disease, you understand 100% that it takes a toll on not just the patient but on everyone who loves her/him. I think that was a large part of what stoked my depression– seeing how my husband (a doctor) was unable to cure me. Hearing everyone who looked at me take that sort of “oh poor you” tone. While well intended, it made me crazy. You start to believe you are the disease, not the person anymore.
Reading the work of the authors mentioned here was empowering. I applaud them and thank YOU for reading this essay with an empathetic heart. I pray you have all health and happy days ahead, my friend.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Sarah, I hate that tumbling effect of one illness after another caused by an autoimmune disease. The only thing to do is love yourself, hang on, and know that it will get better. Thank you so much for writing the post and bringing other writers with illness to my attention. I’ll certainly be inspired by them when I have a bad turn. One other writer to add to your list — Hilary Mantel who wrote Wolf Hall and Bring Up the Bodies. She has suffered from endometriosis all her life. All the best . . .
Dear Lorraine,
You are so right about that “tumbling effect.” You feel like you’re going to snowball right over the cliff and be blasted into a million pieces upon impact.
I love Hilary Mantel. My beloved aunt suffers from endometriosis, as does Nafissa mentioned in this essay. I have a particular ache for that chronic illness. So painful. So far reaching in its consequences. So many stigmas attached to it being a “woman’s problem.” Thank you sharing and for helping us un-shadow these illness so no one feels alone or ashamed.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Sarah, writing seems damn hard enough without the body’s lament. Having had complicated dental misery myself, I was cringing when I read your piece. I wish you progress toward a more pain-free life.
We can also look at Flannery O’Connor’s life of challenge: she wrote through her 12-year battle with lupus, dying at 39, finishing two novels and many of her great short stories during her illness.
Ahhh, Tom! My teeth will be the death of me, never mind everything else. All who knows me well understands that I can take just about any pain–and have– calmly without tears or drama. I grit my teeth (literally) and hold steady until whatever hurts passes. Because thus far, it has always passed eventually.
EXCEPT FOR DENTAL PAIN. It is the one thing that will bring me to blabbering, end-of-the-world hysterics. Dental abscesses are murderous. I’m not sure what you’re facing but godspeed and God bless, my friend!
Also, yes, O’Connor! She’s on my list of chronically ill inspirations. Absolutely.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Sarah–You definitely are not alone. I’ve been chronically ill most of my adult life and I’m now 80 and still trying to write. I have several autoimmune diseases and other assorted problems that ordinary doctors don’t recognize. When I found the Paleo diet and lifestyle six years ago, I started to improve in a way that had been impossible before. The big difference has been the Paleo Autoimmune Protocol. It’s strict but life changing.
I sold a book to a publisher back in 1992, as I was sinking into the dark hole of illness and depression, and I couldn’t finish another book for about 15 years. Brain fog has been my biggest nemesis over the years. It comes and goes with the depression and gut issues. Last fall I indie published three books in a romantic suspense series. They are on Amazon and other venues. I’m finally published again, without deadlines, writing what I want to write and telling my stories. I will continue to write my stories as long as I can sit up to a computer.
Bless you, Barbara. I am adding YOU to this list of amazing authors who give me hope and inspiration. 80 years young! Chronically ill. Writing on, writing on, no matter what nemeses come against you. You are amazing. Thank you for sharing your story.
Re: the Paleo Autoimmune Protocol diet. I haven’t heard of that. After I was diagnosed with Celiac Disease, I spent 2 years working with a nutritionist. I eat whole, organic, and very basic foods–usually with 5 ingredients or less, and I prefer to eat the same foods over and over (no room for worry/error/surprise). We avoid all packaged products in our kitchen as they are never 100% guaranteed not to be cross-contaminated. Gluten-free is not the same as Celiac-approved, which is hard for many well-meaning people to understand. I’ll have to look into this Autoimmune Protocol–thank you for sharing and good health to you, my dear!
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Sarah,
You are an inspiration.
Blessed be your journey.
You are so lovely, Bernadette. Thank you! I’m reflecting that blessing back on you and your life.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
This is such an inspiring, and generous post, Sarah. Wishing you a year that requires no crappy emojis, and sending strength if it does. Thank you for sharing your experience in order to help others. xo
I ❤️ you so darn much, T. No 💩 Emojis anymore in our 2019, only ✨💫🌟🌸! How’s that for an Emoji gush, eh?
Having your friendship in my life is one of the blessings that keeps me going, sister. Never doubt what good medicine you give, just by being you.
Xo,
Sarah
Thank you so much for this post and your brave sharing of your physical challenges. I began having Fibromyalgia symptoms as a child though I was not diagnosed until I was 45. I am now 63, dealing with osteoarthritis, chronic migraines, chronic depression and anxiety, and still trying to write through it all.
Oh Cheri Lynn, it does my heart such good to hear from you. We are not alone, my dear. YOU ARE NOT ALONE. I’m inspired by your courage to post your struggle here. Write… write from the place you are. Even in this post, it is a seat of power. Never doubt it! ❤️
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
That is a pretty epickly bad winter. May you never know such another!
Another writer to add to the list: the poet William Cowper. Seized with bouts of suicidal depression, spent time in insane asylums, but still produced a beautiful – and frequently encouraging – body of work, ranging from peaceful domestic scenes to songs supporting the abolition of slavery.
From your lips to Heaven’s ears, Deborah! Thank you for those words of hopeful blessing. I speak the same over your life: may you never know such an epically bad winter.
Thank you for sharing about William Cowper. I didn’t know about his mental health struggle. So encouraging to know we can overcome even our own frailties — through our art.
Yours truly,
Sarah McCoy
http://www.sarahmccoy.com
Sarah! Empathetic {{{{{HUGZ}}}}} So sorry you’ve had such a horrible start to the year. I’ve had bronchitis, and years ago burned my lungs (chemical) that left scar damage. I have RA, and the worst issue for me is the debilitating fatigue and weakness. (also my greatest concern considering traditional publishing & contracts) but you are so right, the writer community is, in my experience, a fantastic circle of friends.
Dear Robin,
{HUGZ} received and much appreciated! I cringe to hear that your sweet lungs suffered permanent chemical burns and that you have RA. Yes, you are entirely correct–our writer community will circle round you. Sending some of those hugs back to you. Take care of yourself.
Yours truly
Sarah
http://www.sarahmccoy.com
Dear Sarah,
Thank you for sharing. You are a courageous warrior and I am holding you close in prayer.
Carol
Beat
Wichita KS
My dearest Carol,
Your prayers and friendship mean everything to me and have meant so much through the years. Thank you for being a courageously big-hearted reader! I’m blessed to have you and the Sister Ups in my life.
Yours truly
Sarah
http://www.sarahmccoy.com
Oh my dear Sarah…I’m so sorry that you’ve been so sick and suffering so. Thank you for sharing this with all of us, because your words are sure to reach someone who is also in pain, or dealing with an illness. You know my own journey, but I’m not sure if you know that my daughter has MS. She is doing everything she can to keep her rebellious body strong. And nod my sweet husband has two battles with debilitating back pain and a very new diagnosis of kidney cancer. Many prayers and all my love to you, my very special friend. xo
My sweet Susan
Indeed, I know your journey well and YOU are a daily inspiration. You’ve battled and been victorious over so much, beautiful friend. I’m praying for your family–your daughter and your sweet husband. You are living proof that miracles happen. We are all here for a uniquely specified purpose and time. Thank you for being a bright love light during my (and many others!) moments of struggle.
Hugging you in spirit,
Sarah
http://www.sarahmccoy.com
Dear Sarsh,
Thank you so much for this! It has been a doozy of a winter! It is so hard when chronic autoimmune illness overwhelms your life with pain, depression and becoming life threatening.
This winter illness has had the upper hand and depression had darken the path for creating. I have not been able to write and only a little knitting and cooking is only for survival not creativity.
Thank you for sharing about chronic illness among writers. Suffering is often in the shadows and so very lonely and at times frightening. There is strength and wisdom in knowing that we are not alone.
Prayers and hugs!
My dearest Nita Joy,
It breaks my heart to hear that this winter has been wicked on you, sweet Nita Joy. You are far too kind and giving to suffer. Please know that you are absolutely not alone. In fact, your bravery in sharing your daily struggles have been my inspiration and encouragement. Never doubt how influential you are to others.
Praying for an army of healing angels to stampede your home, bringing a new chapter of peace and health to you and your family.
Yours lovingly,
Sarah
http://www.sarahmccoy.com
Sarah, I’m so sorry you’re going through this. Sending you a big hug and muchos besitos! 😘😘😘
Sending you a thousand besitos back, Letty dear! I’ll miss seeing you at Tucson Festival of Books this year, but now you understand why I had to put the breaks on some work travels. We must take care of ourselves first. Sometimes that means missing the party so we can rest and heal.
Con cariño,
Sarah
http://www.sarahmccoy.com
I will miss seeing you as well. I was looking for your name on the schedule earlier this week and was wondering why it wasn’t there. Yes, now I know. ☹️ There will be other book festivals, though. You are more important so rest and take care of yourself. Praying you will feel better and that spring will bring you better days! 💐 ❌⭕️❌⭕️
I’m so sorry to read how particularly harsh this winter has been for you. It seems like everyone I know is fighting a battle on some level right now.
I love you dearly, and I’m praying for those warm spring winds to start nudging winter and all its tortures away so you can return to good health.
Maybe a trip to Puerto Rico to thaw the body and soul…?
I ❤️ you, Erika. Equal of praise and even greater admiration are the family members caring, living, and loving those with chronic illness. You and your mom are a daily reminder to me that being human means being frail. But our spirits are made of indestructible stuff.
Thank you for this beautiful message and for the prayers. Going home to my people in Puerto Rico would be heavenly. My grandparents are headed that way from DC this week! I told my abuelita that a part of me is going along in her purse to breathe in the good, clean coconut air, wash my hair in the sea, stain my fingers with plantains…
My love to you, purdy pal.
Sarah
I love your honesty, Sarah. Your body might be weary this winter, but your soul continues to shine bright in how you still manage to draw others close and inspire them, even in your pain. My nephew was diagnosed with Celiac when he was three (he was severely ill when they found out), and he is now eight. I have seen firsthand the battle you are facing, and I admire you even more than I already did. Much love and prayers for a beautiful spring. It is coming, my friend.
Sweet friend, I’m hugging you fiercely in spirit. Thank you for this loving message and for the prayers. We believe in the power of those. 🙌
I’m so glad they diagnosed your nephew early! That’s key to a healthy adult life. I wasn’t diagnosed until I was 22. By then, years of the disease had left my stomach villi completely eradicated. My body stopped taking in nutrients. The pain was debilitating and every sniffle became a hospital visit. Even now, 16 years into recovery, my intestinal villi are still only a fraction of what a normal person has. So when I do accidentally consume even a micro of gluten, my body reacts and my immunity is weakened to other viruses.
It’s such a blessing that your nephew knows and can maintain his intestinal good health into the future. He’s a lucky boy to have family members like you who are helping him with that battle. And as I told Erika above, YOU– family members– deserve as much if not more respect. It’s so hard living with someone battling a long-standing/chronic illness. You and your husband… I see your strength and I stand in awe. That is courage. That is love. That is the miraculous hand of God. So thank you for inspiring me, beautiful Jolina.
Love,
Sarah
http://www.sarahmccoy.com
Wow!
Much empathy! I have many autoimmune diseases/issues.
Newest is vertigo due to an autoimmune disease of The inner ear. I couldnts6 just have an ear infection.
I do not have Celiac’s but am gluten intolerant.i get the 5 ingredients or less. I eat a lot of chicken and squash.
Not an author, but I do author pr on social media, and help with A Novel Bee. The chronic fatigue, and debilitating migraines can interfere somedays.
Tonni! It’s so lovely to see you here. I love A Novel Bee’s book club on Facebook. Such a loving community of readers and now I know why– YOU are there!
I’m so sorry to hear you struggle with autoimmune diseases and gluten intolerance. It’s hard when we live in a Facebook/Instagram society of outward perfection. Everyone smiling and “filtered” to their most beautiful, best selves. When in reality, we’re all struggling in the muck of simply being human. I’m a firm believer in finding the silver lining and looking for the good, but that’s part of the battle– we must seek it in the first place, because not every day is rainbow and roses. None of us has it all. None of us ever can. That’s the nature of being alive. Some days we are going to feel terrible and that’s when we need our friends and loved ones most. I’m so glad I have you in my literary community. Thank you for reading this essay with such an open heart.
Yours truly,
Sarah
http://www.sarahmccoy.com
I’m amazed to read about deep struggles of writers and it gives me courage to forge ahead and gather my thoughts to write them down. But first, I need to finish reading.
Dear Laura,
Thank you for reading. Forge on, my dear!
Yours truly,
Sarah
http://www.sarahmccoy.com
Sister-woman,
You are always the effervescent, positive, giddy with life joyful moment in my life during our monthly conversations on the air at WSNC 90.5 FM. I had no idea that you were dealing with anything more stressful than writing deadlines, an ultra-conservative mother and a yard begging for sod. Your swell outlook on life completely cloaked your chronic disease. I wish you a spring filled with joy, grass and good health. xxoo “Brother Jim.”
So sorry that you’ve been enduring such a beastly time. I can relate since I live with five autoimmune diseases. I never know in the morning which way will be up for the day until I’ve done some stretches in bed and gingerly put my feet to the floor. My obsession has been with composers with chronic or acute illnesses who composed gorgeous music while sick. For some reason, I think of composing as being somehow harder than composing fiction or essays — pulling the sound out of the imagination and notating it on paper? Wow. Thanks for calling attention to the authors who lived with chronic illness. I was surprised about George Orwell. I had known he died of TB, but not that he suffered from COPD. I hope spring brings you new health along with healing sunshine and flowers!
I’m only a year later, Sarah, responding to your words on chronic illness. How I needed them today! It’s 24 hours before my BD and I’m still sitting on my heels after four brain surgeries for a ruptured aneurysm and eight family funerals. My novel awaits my recovery on every level. But now I have your story to inspire me on. Thank you!