I’ve written about being a “spoonie.” And the difficulty I had in referring to myself as a “spoonie.” (You can read more about ithere.)
Whether or not I describe myself as a spoonie, certain facts remain:
– I live with a chronic illness causing chronic pain.
– I have limited amounts of energy each day.
– I cannot always rely on my body to do what I would like it to do.
– There is no denying all the ways illness has changed my life, and all these years later I still feel sad/angry/frustrated for all the “little” ways my daily life has been made harder since becoming chronically ill.
These feelings are not unique to me. Which is one of the reasons I wanted to read A Spoonie’s Guide to Self-Acceptance, a poetry chapbook written by Kelly Esparza. (Kelly serves as the Editor-in-Chief of FLARE Magazine, an online journal where my personal essay, “Am I a Spoonie?”, was published.)
Ms. Esparza’s collection is an honest, tender, thoughtful look at a spoonie’s life.
There were many times I read a poem and felt myself nodding in agreement. Because, unfortunately, Ms. Esparza “gets it.”
Here are just a few phrases that really made an impression on me:
“rashes snake up your legs, a butterfly blush kisses your cheeks,” from “Blame It on the Sun”
“You get wheeled around in a wheelchair sometimes, because you’re Fatigue’s next victim, and you’re stuck in Inflammation’s sticky spider web of deceit” from “Invisible Illness”
And the final poem in the collection may be my favorite. It’s titled, “Welcome to the Spoonie Club,” and includes these phrases:
“I’ve got a bouquet of spoonie problems, but I’m not letting that stop me.”
And
“Knives cut where it hurts, forks, are pitchforks for the hunted, yet spoons scoop and uplift.”
One last thing, friends. Wishing you Merry, Happy Days. May you feel cozy and comfortable. And may you enjoy lots of reading time!
When this blog post publishes on Wednesday, December 17th, we will be a week away from Christmas Eve, a week and two days away from Kwanzaa, and at about the halfway point in terms of celebrating Chanukah. And I have a gift recommendation to share with you!
Author, coach, speaker, and friend, Sandra Postma, has written Surviving the Holiday Season with Invisible Illness. This e-book is under-60 pages, with large font and lots of white space. After purchase, you can access it on your phone or your computer monitor or print it out to have a physical copy nearby. All these options exist, all these thoughtful touches were put into place, because Sandra is herself a spoonie and she “gets it.”
This book is a gift.
A gift for someone living with an invisible illness. A gift that says, “I know. The holidays can be so tough. I’ve been there. Let’s see if I can help.”
A gift for someone living with an invisible illness to give to friends and families. A gift that says, “Here. Please read this. This is how I feel but didn’t know quite how to express.”
A gift for the friends and family of someone living with an invisible illness. A gift that says, “I wanted to learn more about how I can help you and support you during the holidays so I bought, and read, this book. This is what I learned. Now, let’s apply it.”
Sandra has really thought of it all. Her book offers:
– Suggested scripts for when you have to decline an invitation (and a reminder that “you cannot control how others react, and saying no respectfully is a personal boundary; not a failure.”)
– Virtual pats-on-the-back for the work you’re doing living with a chronic illness and also trying to navigate the holidays, families, and different routines and activities in ways best suited for your individual situation
– Reminders to be gentle with ourselves. Our lives will look a lot different than others who are not chronically ill.
– Encouragement in the truth we sometimes overlook. As Sandra writes, “Wherever you are in bed, on the sofa, or somewhere in between, there is one certainty in life and that is change.” Spoonies know that change isn’t always positive, but what if it is? “What if things will become amazing? I want to be here to see it.”
– Planning pages to help you intentionally create your own Survival Kit, so it will be ready when you need it
– Collection of Affirmations, when you just need a little burst of a pep talk
– A change in perspective. Sometimes it’s so easy to just keep going, telling ourselves the same thing over and over, behaving in the same way. Sometimes it really does take someone else to shine a light and help us see things differently. I keep returning to these statements: “We don’t always have to fix a negative emotion, distract ourselves from it or turn it around. We feel stuff for a reason and it doesn’t appear so we can then push it back down.”
Thank you, Sandra, for taking the time and energy to put this e-book out into the world.
I don’t one-hundred percent know what I’m doing in terms of my writing career. (To be honest, I never dreamed I would even have a “writing career.”) I do know that I’m always learning, I’m always trying to improve — in terms of my writing craft, the way in which I share my writing, and the ways I connect with readers and other writers.
I have written a weekly blog for over a decade. In those very early years, before I invested in my website (www.wendykennar.com), each week’s post was written about any and all subjects. Anything I felt like writing and sharing I did. It was random, and because of the lack of cohesiveness, I think it was harder to find readers who would subscribe and regularly read my posts. It was much more difficult to form a community back then.
Then, I re-organized my blog and wrote about one of three B’s in my life — Books (because writers are also readers), Boys (I’m the mother of a son and a former elementary school teacher), and Bodies (I live with an invisible disability).
I have since deleted the “Boys” section, because my son is almost an adult. I don’t write about him and our interactions and relationship in the same way. Plus, I haven’t been a teacher now for twelve years.
And, in another move that is also related to learning and growing, I have started a Substack account. Some of my blog subscribers have signed up for my Substack, currently known as “Wendy’s Weekly Words.” (wendykennar.substack.com) But for the most part, my Substack subscribers and my blog subscribers function as two distinct groups.
I would like to change that. Here’s how:
I will continue posting my weekly blog here at www.wendykennar.com . My blog posts will generally be focused on books and bodies. Each week, I’ll continue writing about something I have read or my experiences with a chronic illness, life with chronic pain, and/or living with an invisible disability.
And, I will be writing a bi-weekly Substack (wendykennar.substack.com), which will not just be a copy of what I have up on my blog. (Which is the way my relatively young Substack has been used up to this point.)
My bi-weekly Substack will now include:
– links to my recent blog posts in case you missed them
– a writing prompt
– a wondering (something I’m confused about or have questions about. Maybe you have the answers.)
– a recommendation (something I read or watched or listened to)
– and when I can, a couple of famous dates in history that are somehow relevant to my writing and what I share.
That’s what I’m planning to do.
Here’s what I’m asking of you, please:
If you haven’t already done so, please subscribe to both my Substack (wendykennar.substack.com) and Blog (www.wendykennar.com). If you already are subscribed at both places, please just let me know in the comments section on one of my sites. (It would be great if you also followed me on Instagram @wendykennar. That way you’re sure not to miss out on anything I write or share.)
Those of you who subscribe to both my Substack and Blog, will then have a chance to win a book in a drawing. Names will be placed into a hat and I will randomly draw one reader’s name. As a thank you, I will mail you a personalized copy of Chicken Soup For the Soul: It’s Beginning to Look a Lot like Christmas. (My story, “A Timeless Gift,” is included in this collection.)
October 2019
This is all new to me. I’ve never done anything like this before. Maybe I’ll need to make some changes down the road. But for now, we’re going to give this a try. I hope you will continue being with me on this journey. Living with a chronic illness and writing can both be pretty isolating. I hope you know how much I value your support, how much your being here with me really does help!
Sign up by next week’s blog post on Wednesday, December 17th. That way I can have the drawing on Thursday, December 18th, and I can get your book out in the mail on Friday, December 19th.
After that you can expect regular blog posts each Wednesday morning.
And the first issue of my bi-weekly Substack will go out on Sunday, December 28th. (And the next Substack will be in your inbox on Sunday, January 11th, 2026.)
Thank you, friends. Thank you for reading. Thank you for supporting my writing. Thank you for supporting me.
“Mother, wife, daughter, friend. My most important roles. My most meaningful roles. And fifteen years ago, I added ‘spoonie’ to the list when I removed ‘teacher.’ It is a role I didn’t choose, a role I still don’t want, but one that is with me always, lurking like a shadow. Sometimes the spoonie version of me feels larger than all the other parts of my identity, overriding all other aspects of my life, screaming for attention, and unwilling to settle into the background. Sometimes the spoonie me is behind me or next to me, living alongside all my other roles, allowing me to live my life alongside my chronic illness. Rarely the spoonie shadow is not visible at all, and I am gifted precious reminders of the me that used to be — pain-free, illness-free, and free to do what I want, secure in the knowledge that my body would behave as I expected it to.”
The paragraph above is an excerpt from my recently published personal essay, “Attempting to Soar as a Spoonie.”
I’m pleased to share my essay was selected for publication in Issue 17 of Please See Me. The Issue’s theme is “Free,” and the prompts included:
– What does it mean to you to be truly Free – to live your best life no matter your health, life, or caregiving challenges?
– What does it look like for you when you do not feel free?
The prompts allowed me to write an entirely new piece and include images and feelings I don’t think I’ve shared anywhere else in quite this way. I hope you’ll read it (by clicking here), and while you’re on the website, be sure to check out the other published pieces, including fiction, nonfiction, and poetry.
June 2025 - Oahu. The smile is real. And so was the pain.
Some weeks I know exactly what I want to write for my weekly blog post.
Some weeks I have several ideas for my weekly blog post, and it’s just a matter of deciding which one to choose.
And other weeks, I have no idea what to write for my weekly blog post. I thought that was going to be the case for this week’s post.
But I was wrong.
Because all of a sudden, on Monday evening, the idea for this post came to me. I could see the post, in a sense. I just had to get it down.
Barbara Abercrombie, who I have written about before, used to tell our classes that writers don’t just wait for “The Muse” to show up. If you do that, you’re waiting most of the time, and writing almost none of the time. But, she did say, that if you put in the work, if you regularly wrote, if you dedicated yourself to a writing practice, every so often The Muse shows up and gifts you a piece of writing.
This post is that gift. Here I present:
4 Things Everyone Should Know About Living with Chronic Illness(es):
Crying doesn’t always mean the pain is extreme. Sometimes, I cry out of frustration. Exhaustion. Sadness. Fear. Discouragement. Weariness.
Not crying doesn’t mean the pain isn’t extreme. Sometimes, crying isn’t an option. Standing in line at Trader Joe’s, it’s best if I can hold the tears back until I get into my car, for at least a bit of privacy. Tears out in public lead to questions. And while those questions may all be well-meaning and may come with offers to help, I just don’t always have the bandwidth to start explaining my specific situation, my pain, to strangers.
Chronic illness is not the same as an illness. Yes, everyone has a story — of a bad flu, a broken bone that didn’t heal properly, an unforeseen side effect after a “routine” procedure. But none of that is the same as living with a chronic illness. (And, just to be clear — I’m not saying one is “worse” than the other. I’m saying one is different than the other.) Living with chronic illness involves a different type of “wear and tear” on your body that most people aren’t experiencing. A different type of tiredness. Think of it this way — me telling you I spent time practicing my three-point shooting is much different than Caitlin Clark telling you she spent time practicing her three-point shooting.
There is no easy fix. Someone lives with a chronic illness for that very reason — it doesn’t eventually “go away.” Chronic illness patients aren’t being difficult. Or stubborn for not trying the thing that worked and helped you/your relative/your coworker. These chronic illnesses are lifelong conditions because they aren’t curable. No amount of green smoothies, yoga, or vegan-only foods will magically change that.
Note — several years ago I wrote a similar post, 4 Reasons Why Chronic Pain Sucks. Everything I wrote then is still true. Again, that’s the “chronic” part of it.
Spoonie friends, what would you add to my list? What do you think more people should know about living with a Chronic Illness?
This picture was taken when I finally felt strong enough to begin the trek back down. I admitted defeat. I looked awful, and I felt awful. But also, I was so very grateful. Things (mainly, me) could have been so much worse.
The topic of this week’s blog post involves our June trip to Oahu. In case you missed any of my earlier posts about our trip, I’m including the titles here. Click on the titles and you’ll be taken directly to that post.
When we began researching our family trip to Oahu, a visit to Diamond Head was one of the “must see’s” that showed up on list after list.
“Hawaii’s most recognized landmark is known for its historic hiking trail, stunning coastal views, and military history.”
“The 0.8 mile hike from trailhead to the summit is steep and strenuous, gaining 560 feet as it ascends from the crater floor.”
It didn’t take a lot of reading to realize a visit to Diamond Head isn’t easy for anyone, even someone in the best of health. Visiting Diamond Head required a “strenuous hike,” two words that don’t automatically come to mind when thinking of “things Wendy should do while on vacation.”
My husband was the first to say we should skip it. Our seventeen-year-old son said he’d like to see it if possible. And, I said, “Of course we’ll go.”
When I told one of my closest friends about our upcoming trip and asked if she had any recommendations, she searched her phone, looking through the photos she had taken when last on Oahu.
“There’s Diamond Head, but you’re not doing that,” she said.
“We already have reservations,” I said.
“Wendy…” she said. You could hear the rest of the unspoken sentence in just that one word. Wendy, what in the hell are you thinking?
As I had explained to my husband and son, I wanted to see and do as much as I physically could. The truth is during the last couple of years my physical health has deteriorated. I am not as physically strong as I was. I own, and occasionally use, a wheelchair. Which is why, when it came to this trip, I wanted to see and do as much as possible, “while I still kind of can,” I told my family.
We had reservations for Friday, June 13th. Maybe that was a sign.
I definitely should have paid more attention to the ambulance and helicopter we saw in the grassy field adjacent to the parking lot.
“Maybe it’s for some sort of training exercise,” I said as I locked our rental car and double-checked my handicap placard hung from the rearview mirror.
It wasn’t.
Later in our visit, we heard the helicopter had been used for a rescue.
We had our hats, our sunscreen, our bug spray, and water. We were ready.
“Just take your time,” my husband said.
I started off walking slowly, my usual speed.
We stopped periodically to wipe the perspiration from our faces and to take sips of water. At times there was a handrail to hold onto. At times there was a bit of shade. Other times there were neither of those things.
My husband repeatedly reminded me we could stop and turn back at any point.
“Nope. I want to go as far as I can,” I said. Stubbornly, or stupidly, depending on your perspective.
The truth is I was worried and scared. About the steepness and the stairs I knew were soon to come. I didn’t know if my legs were strong enough. I worried this one outing would negatively impact the rest of our trip. (Remember it was Friday, June 13th. We weren’t flying back home until the following week, on Thursday, June 19th.)
Ultimately, it wasn’t my legs that forced made me stop; it was heat exhaustion.
I’ve always been sensitive to the heat. (Ask my dad to tell you about the infamous Dodger game we attended many years ago.)
But this time, it all kind of happened at once. I was over-heating. Dizzy. Nauseous.
We found a spot, a ledge where I could plop. My husband dug in his backpack, producing a towel from the hotel. It felt like a magic trick. I was having a hard time concentrating, and my mind couldn’t make sense of how the towel had just appeared right when I needed it. (My husband had smartly packed the towel earlier that morning, without me knowing, without making a big deal out of it.) I turned my head, certain I was about to vomit, and trying my best to be as quiet and private as I could.
Another woman sat nearby on the same rocky ledge. She was chatty, telling others who paused for a drink of water or to take a picture that she had a bad ankle.
“I’m pretty proud I made it this far,” she said.
Her husband had gone on ahead and would take pictures from the summit. She appeared so calm. So friendly, too, asking how I was doing and offering me anti-nausea pills.
Why couldn’t I accept my physical limitations like this woman had? Why, instead, did I feel like I was letting down my son? Why did I feel weak and inept? Why did I feel like a failure?
I was so quick to discount all I had done, how far I had gotten. (We stopped near a sign that read Audio Tour 9.)
I have been living with this illness for fifteen years, and I still haven’t figured it all out, and I’m not sure I ever will.
When am I persistent and determined?
And when am I foolish and stupid to try and push through?
On the way back down the trail, we once again came across the woman with the bad ankle.
“You’re looking a lot better,” she said. I thanked her for her kindness.
I didn’t tell her I aspired to be more like her — accepting of her body’s limitations, content with her effort, satisfied with her experience.
Part of our tasks has been to think about what we write and why. (I wrote a bit about this in a May blog post. Click here if you missed it.)
This week, however, I am sharing two photos with you as another example of what I write and why.
The photo shows my seventeen-year-old son and me parasailing, a week-and-a-half-ago during our family trip to Oahu. We calmly dangled 1000 feet above the Pacific Ocean. We talked and marveled at the incredible view below us and around us, noticing the quiet and the sense of peace we felt being that high up.
On that day, in those moments, my body was physically strong enough to climb aboard the boat, maneuver into the harnesses, and smile and wave at those down on the boat looking up at us.
Yet back at the hotel, my backpack held my blue disabled parking placard. And when I left Los Angeles and arrived in Honolulu I received wheelchair assistance at both airports. (I also had wheelchair assistance at both airports for our return flight.)
Both situations are true.
I may fit the more narrow, stereotypical idea of a disabled woman when someone sees me sitting in a wheelchair at the airport.
But, I’m still a disabled woman, even when I’m gliding through the air, with a multi-colored parachute open behind us.
And that is why I write — to demonstrate there is no definitive, one-and-done definition of disability.
Friends, I’m curious. Have any of you gone parasailing? Where? What was your experience like? Please feel free to share in the comments!
Friends, I’m pleased to share that my personal essay, Time to Take a Seat, has been published in Wishbone Words Magazine, Issue 15.
This piece was a difficult one to write. It’s a personal essay that went through many revisions before I submitted it.
It’s a personal essay about my decision to purchase a wheelchair.
I’m grateful Wishbone Words Magazine provides this space for me and other “disabled, chronically ill, and/or neurodiverse writers and artists” to share our experiences and our creations in a safe, inclusive space.
You can click here to learn more about purchasing Wishbone Words Magazine, Issue 15.
“Choosing to define yourself as a spoonie is an individual decision. It is not a medical term bestowed upon you by someone else. Other terms, such as disabled and chronically ill, are assigned to us by those in the medical field. No one will call you a spoonie, until you decide to call yourself one. Being a spoonie was fine for others, but I didn’t think it applied to me. Until there was no denying that it did.”
The paragraph above is excerpted from my personal essay, “Am I a Spoonie?” which I’m proud to share was recently published in FLARE Magazine. From the website: “FLARE was named after autoimmune flares one gets when they are chronically ill and a play on the word “flair” for writers to show their “flair” despite the “flares” they encounter.”
Click here to read “Am I a Spoonie?” in its entirety.
For my chronic illness friends, do you consider yourself a spoonie? Or is there another term your prefer? Please share if you’re comfortable!
My son returned to school on Monday after his week-long spring break. It was nice to have a change in my routine and be able to sleep past 6 am.
But his spring break, along with my husband’s days off work (timed to coincide with our son’s week off), just amplified what I am always aware of but generally don’t call attention to — when you live with a chronic illness, you never get a day off.
This is not to say that things are all the same, across the board, for everyone who lives with a chronic illness. Because that’s not the case at all. Medical conditions and health histories differ from person to person.
However, I think it is fair to say that, for the most part, all chronically ill folks are dealing with a lot on a daily basis:
– overseeing medication: keeping track of when to take the meds, refilling the prescriptions, making trips to the pharmacy to pick up prescriptions and/or arranging to be at home to sign for and receive mailed prescriptions.
– keeping track of symptoms: looking for patterns between what we did and how we feel. Or patterns between what we didn’t do and how we feel. Or patterns between how we slept and how we feel. Or patterns between what we ate and how we feel. Or patterns about what we didn’t eat and how we feel. You get the idea.
– managing finances: writing checks to cover co-payments. Making credit card payments towards the expensive, insurance-didn’t-cover-the-full-amount, most-recent, doctor-recommended scan.
– scheduling: consultations, evaluations, and follow-up appointments. Figuring out days and times for routine lab work. Keeping track of what you can and can’t do before each appointment or medical test. Fasting before some labs, but not all labs.
– fatigue: it’s not feeling tired. It’s not even being exhausted. Because those are temporary. With a good night’s sleep, general tiredness and exhaustion disappear. Chronically ill folks live with fatigue that is not related to the amount of sleep you get each night. It’s the awful feeling of waking up feeling absolutely un-rested and completely drained and knowing you still have the whole day ahead of you.
– dealing with side effects: every medication comes with a long list of potential side effects. Some are common, such as constipation and diarrhea (for which you may need medication to help with those side effects, even though those symptoms were caused by medication in the first place). Generally, any possible, unpleasant side effects are deemed worth it by the prescribing doctor. In other words, the possible good outweighs the possible bad — including weight gain and hair loss.
And there’s one more thing. Something I think most people aren’t even aware of.
Everyone I know who lives with a chronic illness, also lives with a superpower.
What’s the superpower? you wonder. I’ll tell you:
Pretending we’re well, when we’re not.
Someone living with a chronic illness and/or chronic pain is never faking being sick. Instead, they’re actually faking being well.
WendyKennar.com 