autoimmune disease

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?

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

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.

March

Posted on by Wendy Kennar
(Me on my 17th Birthday. This year I'll be celebrating my 49th Birthday.)

I always focus my blog posts on one of the three big B’s in my life: Books, Boys, and Bodies. (Books – because I’m a reader and a writer. Boys – because I’m the mother of a son and a former elementary school teacher. Bodies – because I live with an invisible disability.) 

This week’s post is slightly different. Because I realized those big B’s in my life, those central ideas that are so important to who I am and what I do and how I go about my days, can actually all be represented with an M — the month of March.

You could almost summarize my life just by taking a look at our current month. 

Let me explain.

March is the month of birthdays — my mom’s and my son’s (on the same day!) and mine.

It’s the month of anniversaries — my parents’ wedding anniversary, the anniversary of my first date with my husband as well as the anniversary of my last day of teaching (both of these life-changing events happened on the same date, just 16 years apart!)

It’s the month of special days — including Read Across America and the First Day of Spring.

It’s the month of important days — International Women’s Day and César Chávez Day.

It’s the month of awareness — Women’s History Month and Autoimmune Disease Awareness Month.

Of course I know I am more than the sum of these days. The first day I became a mother, the last day I worked as a teacher. 

But it’s quite a coincidence to have all these days happen within one particular month. 

And each year, I find I am becoming increasingly reflective, more emotional, and more surprised by how these days touch me. 

Dear Readers, do any of you have a month that means to you what March means to me? If you’re comfortable sharing, I’d love to know.

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.

I Gave Myself a Time-Out

Posted on by Wendy Kennar

Why am I smiling? Because I'm proud of myself. Giving myself a break was, is, a big deal.

For some reason, this week’s blog post felt hard to write. I think it’s because there’s so much going on — within our home, within our family, within our world. And sometimes, it just feels like a lot. Like too much, actually. Like I really wouldn’t mind if we could somehow press pause on the day, and I could just have a day to try and catch up. Catch up on emails and podcasts and magazines. Catch up on sleep and watching laugh-out-loud movies. 

Of course, life doesn’t work that way. 

But last week, I did do something that was my version of a brief pause. A kind of time-out.

Last Wednesday morning, I went to physical therapy. The session went well, and my physical therapist was pleased with my progress. When it comes to walking on the treadmill, both my speed and my stamina have increased over the months we’ve worked together. Those improvements don’t necessarily transfer into less pain; however, those improvements do mean my legs, especially my left leg, is “strong enough.” Because the week before physical therapy, while I went for one of my neighborhood walks before my son’s dismissal from school, I had an “incident.” I was in the middle of walking around the block, when a sudden pain shot through my left leg. It was the type of pain that made me stop and look around, searching for something I could lean on. The type of pain that brought tears to my eyes. I paused for a couple of minutes, but then what else could I do but continue walking? I had to get back to the car. And I did. (I also had really bad pain the rest of the day.) It was super scary, honestly. When I told my physical therapist what had happened, he of course had no magic solutions to offer. But he did tell me that my body is strong; I’ve been doing the work. And even though the pain felt awful, even though I limped the rest of the walk back to the car, I got to where I needed to be. My body, my legs, are strong enough to do what I need them to do.

But, my body is also tired. And sensitive. And worn-out. 

So Wednesday afternoon, after physical therapy, I did something I don’t usually do. I didn’t come right home so I could get back to work on getting things done on my to-do list. I had a post to work on for MomsLA.com, greeting cards to write out, gifts to wrap, bills to pay.

But instead of coming home, I took myself to our neighborhood cafe. I ordered a cafe mocha, sat at a table that was neither in the shade nor in the sun, and I read two chapters of my novel. (By the way, reading Katherine Center’s The Rom-Commers and really enjoying it!)

It might not seem like a lot to some people, but for me it was. It was me taking time for myself. Doing something because I wanted to do it. Not because I felt I should. Or because it had to get done. But because I wanted to do something purely for the pleasure it brought me. 

And I’m so glad I did!

How about you, dear readers? What was something you did recently just for you? Feel free to share in the comments. 

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.

An Update on My Memoir

Posted on by Wendy Kennar

I wanted to use this week’s blog post to give you all an update on my memoir.

I have been querying literary agents on-and-off since March. Some agents respond to your query with either a yes or no, while other agents will only respond if they are interested in reading more from you. I have received some form rejections as well as some very nice, encouraging rejections; however, no literary agent has said yes, or even a variation of yes — as in, I’d like to read more before making up my mind. 

Which means I now go to plan B — researching smaller publishing houses. These independent presses do not require an author to be represented by a literary agent and accept submissions from the writers themselves.

The bottom line is — I’m not giving up. I’m not stopping. I’m just changing course, because I truly believe in my book and I want to get my book into the hands of readers. 

You may remember my October post when I described my memoir and explained that it’s divided into three parts. (If you missed the post, click here to read it.)

The first piece in the first section is a Letter to the Reader. The letter explains why I eventually felt compelled to write my memoir. For several years I refused to write about my “medical condition.” Notice I used the word condition and not illness or disease. I didn’t think my autoimmune disease was important enough to write about. Surely other people dealt with more life-altering, more painful, more scary health issues. And while that’s definitely true, it doesn’t mean my experiences are any less important or any less book-worthy. 

So this week, I’d like to share a portion of my Letter to the Reader with you. You all are on this journey with me, and knowing you’re here, reading my work week after week, liking, commenting, sending me emails, supporting me is something I don’t take for granted. I appreciate you all. I hope you know that. 

From my Letter to the Reader:

“This book is deeply personal to me. It has lived in my head and my heart for years. I have created it with love and respect, for me — and for you. 
“I was thirty-four years old, a wife, a mother, a daughter, and a teacher, when I became ill. I didn’t comprehend what a rare, autoimmune disease diagnosis would mean. I didn’t realize my life would forever be changed.”

“The book you are reading is the book I wish had been available to me. It is the book I needed to read. 
“It is my hope that readers who don’t live with a chronic illness will finish this book with a different perspective, an adjusted way of looking at people. A bit more patience and understanding for others. A realization that you simply can’t know someone’s hurts just by looking at them.
“And for my readers who live with chronic illness and/or chronic pain and/or invisible disabilities, I sincerely hope that you read this book and feel a connection with my words. I hope, in these pages, you see a part of yourself, to the point where you can show an essay to a loved one and say, ‘Here, please read this. This is what I mean. This is how it feels.’ I hope, too, that reading this book brings you comfort in knowing you’re not alone. Many of us feel so desperately isolated with our medical struggles. It is an unbelievable comfort to find someone who ‘gets it.’ 
“I get it.”