invisible disability

4 Things Everyone Should Know About Living with Chronic Illness(es)

Posted on by Wendy Kennar
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):

  1. Crying doesn’t always mean the pain is extreme. Sometimes, I cry out of frustration. Exhaustion. Sadness. Fear. Discouragement. Weariness. 
  2. 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.
  3. 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. 
  4. 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?

Suddenly Silent and Still

Posted on by Wendy Kennar

I recently finished reading Suddenly Silent and Still: Finding Joy and Meaning Through Illness, a memoir written by Nin Mok. From the back cover: “In a life-changing instant, Nin is thrown into chaos by the onset of sudden hearing loss and violent vertigo.” 

Because Nin and I are Instagram friends, reading this book felt even more like a conversation between the two of us. This is not just a memoir written by some unknown author. This is the story of another woman, another mother, whose life was forever changed by a sudden illness.
 
My copy of Nin’s book is full of sticky notes. Because though our medical conditions vary, though our life circumstances differ, many of the emotions she wrote about really resonated with me. 
This week I’m pleased to share some of the excerpts that most touched me:

“I have no idea why I was certain my turn would come at the end of my life. I imagined being old and frail before discovering I had an incurable disease. I would then be afforded a moment of introspection before being shown the exit, like a happy-go-lucky partygoer who leaves when the music and fun are over. Never once did I imagine that I would have to stick around after the celebration for the long and arduous clean-up.”

“Jet and Jade were five and three when I got ill. They don’t remember their healthy mother, the one who chased them through the parks, raced them to the car, and sang aloud, albeit out of tune. They just know this mother. The one who struggled to make it through the day. Jet and Jade constantly needing my help and attention made my recovery more challenging, but at the same time, they made my recovery possible.”

“And what about all the other vital organs that I had only one of, such as the heart, liver, and brain? What if they suddenly failed too? My once safe world now felt fraught with unavoidable threats.”

“Why me? What did I do to deserve this?”

“My family relied on me as a co-breadwinner to keep a roof over our heads. This was a matter of survival. I was also our home’s central processor, who organised and coordinated our activities. Lives would fall into disarray if I remained incapacitated.” 

“It was this attitude that made me feel insecure about writing this memoir. I questioned whether my suffering was big enough, whether my misfortune was dramatic enough to warrant a book. Ridiculous, really.”

“Trauma has no size. Rather, trauma is like light, capable of filling the entire room regardless of its wattage.”

“I now lived in a world that was no longer made for me; it was made for the able. I no longer felt normal here.”

“The life I had planned, was looking forward to and counting on, was upended for real.” 

“Returning to work would have rubbed the comparison in my face. By keeping every facet of my life exactly as before, I would know for certain that my life had got worse. I would lead the same life, but now as a disabled person. Returning to work would make the downhill trajectory obvious.” 

“Young people were supposed to recover from illness, not remain ill indefinitely. Worse, I couldn’t rest as one might expect a sick person to. I was not retired; my children had not left home. I couldn’t curl up with a good book all day. I still had to put food on the table and my children through school, all while being sick.” 

“I could see the date creeping in from a distance. It marked the unhappy anniversary of my downfall. That date took the life I loved, chewed it up and spat back out something unrecognisable. It was the day I took a tumble and never stood back upright. That dreaded date will forever be remembered.”

“I no longer compared myself to the previous Nin, nor did I keep measuring up to her. I only cared about where I was now, and where I wanted to be, not where the former me wanted to be.”

“I went from feeling unlucky that this happened to me to feeling lucky that only this happened to me.”

Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.


Diamond Head

Posted on by Wendy Kennar
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.

Defining Disability

The Love Simulation

I Am Who I Am

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. 

Diamond Head – best enjoyed from afar

Defining Disability

Posted on by Wendy Kennar

The work in my Mastermind program continues. 

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!

Time to Take a Seat

Posted on by Wendy Kennar
Image Credit: Wishbone Words Magazine

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. 

Image Credit: Wishbone Words Magazine

My New Career

Posted on by Wendy Kennar
Image credit: Santa Fe Writers Project

“My son, Ryan, started kindergarten the year I retired from teaching. I took it as a sign, a coincidence worth paying attention to. I spent twelve years teaching, encouraging, caring for, and loving my students. As Ryan was about to embark on his own twelve-year public school career as a student, I hoped he would encounter teachers doing the same thing. I hoped my teaching career counted as a deposit in the good karma bank and that Ryan would be on the receiving end of the dividends.”

The paragraph above is an excerpt from my personal essay, “My New Career.”

And, I’m happy to say “My New Career” has recently been published in Santa Fe Writers Project Journal Issue 32/Spring 2025. 

You can click here to access the entire Issue.

And if you’re short on time, click here to be taken directly to my personal essay.

Though I do hope you’ll have a chance to read through the other pieces in the Issue. There are fiction and non-fiction works as well as poetry, and they all speak to the Journal’s theme of “Renewal.”

Am I a Spoonie?

Posted on by Wendy Kennar

“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!

It’s a 24/7 Job

Posted on by Wendy Kennar
It's just me - using my (invisible) superpower

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. 

Every day.

5 Things I Still Haven’t Learned

Posted on by Wendy Kennar

A few things you should know:

1.  I became ill in July 2010.
2.  I received my diagnosis in November 2011. (This is considered relatively fast when it comes to autoimmune diseases.)

3.  Certain things don’t get easier the longer you live with a chronic illness. 

It’s the third statement that was the inspiration for my recently published “listicle” —  5 Things I Still Haven’t Learned That Are Amplified by My Chronic Illness.

To read the piece in its entirety, click here to be re-directed to Knee Brace Press.

Friends, do any of you relate? Would you add anything to the list? Let me know in the comments.

Hoping For a Change in the Program

Posted on by Wendy Kennar

Last week, I saw my rheumatologist for my three-month check-in appointment. 

You’d think by now that I wouldn’t be surprised or disappointed by the way these appointments tend to go. 

But I am.

I’m still holding out hope that one day, at one appointment, a doctor will look me in the eyes and recognize my daily experience and my effort, as I navigate my life with a chronic illness causing chronic pain. 

This fantasy doctor will listen to me, really listen, when I explain that my days are challenging. That my family has noticed changes in me, and the truth is, my physical capabilities are not what they were, even just a couple of years ago. This doctor will acknowledge my tears as I explain how everyday tasks, like getting in and out of the car or going grocery shopping, are no longer things I can easily do.  

This fantasy doctor will look at me and say:

“That sounds really hard.”

“I realize it’s frustrating, not knowing how you’ll feel when you wake up each morning.”

“I know you’re trying to be the best version of yourself for your family.”

“Good for you for keeping up with your physical therapy exercises at home.”

“It’s fantastic that you continue to move your body and go on your daily walks.”

“I can see you’re trying to implement small changes. That’s great.”

But that’s not what happened at last week’s appointment. Instead I sat on the exam table where my doctor proceeded to move and bend my leg in ways it doesn’t usually move or bend. 

I left the office in more pain than I had when I arrived. 

I dealt with high levels of pain for the next two days. 

And in three months, I get to do it all over again.