undifferentiated connective tissue disease

It’s a Pain

Posted on by Wendy Kennar

The nurse called my name and walked with me from the waiting room to the exam room. In the exam room, she had me step on the scale, and she checked my temperature and blood pressure. And while she stood at the computer, inputing the numbers, she asked me what my pain was like today.

This was about 9:30 am Tuesday morning. My pain was bad. But, the day before had been worse. After waking up to my 6:00 am alarm, I had made the bed, brushed my teeth and washed my face, gotten dressed, and come downstairs. Moving around I felt stiff. Standing up brushing my teeth, I put my weight on my right leg and foot. My left side felt weak, like it might give out. I knew it would be hard to walk down the flight of stairs to our living room and kitchen. I hadn’t expected to be crying before I reached the final step. 

Tuesday morning, appointment morning, there were no tears. Grimaces. Limps. Slow, laborious movements. But no tears. So technically I guess the pain was better, but it was still friggin awful. 

“It’s a hard question to answer when you live with chronic pain,” I told her. 

She didn’t look up.

I tried waiting her out. 

She wanted a number. I finally told her 7.

Was it a 7? I don’t know. I know my left leg felt pressure, as if something heavy was placed on my lap. My left calf felt tight, like it was stuck in almost-muscle cramp. I know getting in and out of my car wasn’t all quick, graceful moments but more like slow, intentional movements. 

When I met with the doctor, we reviewed all my medication, pain-related and otherwise. He told me the goal is to get me functional, so I don’t let the pain stop me from doing things in my life. 

Um, hello? 

What?

“To get me functional?” 

“So pain doesn’t stop me?” Most people who know me know that isn’t the case. 

Perhaps my favorite question was, “when did the pain start?”

I told him the truth. “2010.”

And, as if all that wasn’t bad enough, the doctor asked me his own pain-rating question. Except he didn’t want to know my current pain. Instead he asked, “What would you say was the average for the pain you experienced last week?”

A whole week? I have no idea, and that’s what I told him. My pain fluctuates. Pain can start off feeling incredibly intense and gradually ease up as the day goes on. And the flip side of that is also true — pain can be moderate and then, while doing one of my physical therapy exercises at home for example, something gets triggered and I need an ice pack on my knee, and I’m feeling much worse than I was.

Most frustrating was that my appointment was with a pain management group. These are healthcare providers who work with patients who live with chronic pain. And they should know that if you suffer from chronic pain, you’re looking at that pain scale very differently than someone who is dealing with acute pain. 

Acute pain is temporary. It’s pain that is caused by the result of something specific — an accident or injury of some kind, like falling down or getting hurt while playing a sport. But the key word is temporary. Acute pain won’t last. It will impact your daily life, but not forever.

Chronic pain, however, is long-lasting and difficult to treat. What works for one person might not work for another. And what worked for me three years ago may not work for me now.  

The doctor told me that no pain medication is going to make the pain go away completely. But the goal is for the pain medication to make a significant difference in my life so that my pain doesn’t stop me from doing what I want and/or need to do. 

“We don’t want your pain to stop you from being functional,” the doctor said.

I looked at the doctor in dismay. Shock. Disgust. Impatience. Probably a combination of all of those. 

I told him what I have told other doctors — I think when you live with pain for a long time, you get good at pushing through. You have to learn to live with the pain, alongside the pain, if you’re planning on living your life as fully as you can. 

The truth is no one can really know what my pain feels like. We each experience pain in our own way. However, I am convinced that those of us living with chronic pain, exercise a specific set of muscles. My pain level 6 would be someone else’s level 9. 

Those of us living with chronic pain have more than enough to deal with. I think we deserve a great deal of respect for all we do, including going in to see a doctor. That by itself is a big deal. 

And if I could ask healthcare providers for one change:

Please oh please, stop making patients use an emoji-like pain scale to describe our pain. 

Sharing

Posted on by Wendy Kennar
Many people live with invisible illness(es). Many people look "fine" on the outside.

Last week, an acquaintance asked me about my chronic illness. We had recently started following each other on Instagram, and a few days after she started liking my posts, we bumped into each other in person. 

(Side note – You do follow me on Instagram. Right? I hope you do!
@wendykennar
You follow me, and then I will follow you back. Let’s support each other!)

Back to last week. 

J told me she had seen some of my posts. 

“You talk about pain, but what is it? What do you have?” she asked.

“It’s an autoimmune disease,” I began.

“Which one?” she asked. 

So I told J about my UCTD (Undifferentiated Connective Tissue Disease). I told her some days, and some parts of days, are much worse than others. I told her it was difficult to diagnose. 

“And that makes it hard to treat,” she said.

I looked at her. “Exactly,” I said.

“My sister has chronic fatigue syndrome,” J told me. 

“Oh my goodness, that’s awful,” I said. And it is. (If you don’t know about CFS, you can click here to read an article from the Mayo Clinic.)

“When my sister is in a flare, she says her bones hurt,” J said.

“But I would have never known you had anything. I couldn’t tell,” she said.

“That’s the way it works, right? I’m sure it’s the same for your sister,” I said. “I’m sure most of the time no one would suspect she lives with a condition that sometimes makes it impossible to leave her bed.”

J seemed surprised when I told her I own a wheelchair and use it from time to time. She seemed shocked when I told her I first became ill when my now-almost-eighteen-year-old son was two years old. But how would she have known? I don’t just go up to people and start talking about my autoimmune disease. And as those of you living with invisible illnesses know too well, spoonies have a lot of practice looking “fine,” as we’re out in the world, doing our best to go about our days and live our lives the best we can. 

Now here’s the part I’m most proud of, I didn’t end the conversation there. Friends, I then did something I don’t ordinarily do. I shared something else, something super important to me.

“I’m actually writing a book about living with an invisible illness,” I told J.

J nodded. “To explain about your experience?” 

“Yes, and more than that, to help others see that you can’t always tell what someone is going through simply by looking at them. Being sick has taught me that everyone is dealing with something. Everyone lives with some sort of pain.”

It might not seem like a lot, but for me, that was a big step. I’m not great at self-promotion, of talking about myself, my writing, and my writing goals. But I’m trying to improve on that and get more comfortable talking and sharing about my writing. After all, my writing is a huge part of who I am and what I do. And the truth is I don’t just want to write. And I don’t just want to be published. I also, most definitely, want to be read.

How about you, friends? Do you find it difficult to talk with others about your creative work? How do you go about sharing your writing (or whatever it is that you create)?

Pain Awareness Month. Again.

Posted on by Wendy Kennar
Oahu, June 2025. This is a photo of a woman in pain.

September is Pain Awareness Month.

I wrote about it last year.

I wrote about it in 2023.

I wrote about it in 2022.

I wrote about it in 2021.

I wrote about it in 2020.

You get the idea. 

Each post shares some variation of the same message:

I live with pain. Every. Single. Day. For fifteen years and counting. 

That’s why it’s called “chronic pain.” It’s long-lasting.

You never know what someone is going through just by looking at them. 

Because during those fifteen years, I have lived. I have made new friends. I have written, and published. I have traveled. I have adventured (horseback riding, hot air ballooning, parasailing – twice, zip lining). I have attended Back to School Nights and Open Houses. I have gone grocery shopping and shoe-shopping for my son. I have attended book launch events and Harlem Globetrotter games. I’ve visited museums and beaches. 

I remember meeting with a neurologist, referred to me by my neurologist-at-the-time. She thought this other doctor could look at my medical records and give us a fresh perspective with another set of eyes. 

Instead, this fresh-set-of-eyes-doctor was condescending and rude and mean. Before leaving the exam room he patted my shoulder and told me my pain really couldn’t be all that bad if I truly did all the things I told him I do each day.

And that, right there, is the purpose of Pain Awareness Month.

Those of us living with chronic pain have figured out how to navigate our days while struggling with pain that doesn’t ever completely go away. We have developed work-arounds and shortcuts when possible. We have learned to bite our tongue or clench our fists or whatever it is we do that helps us push past the limit of what we thought our bodies were capable of. 

Oahu, June 2025. Same day as the picture above. This is also a photo of a woman in pain. Notice my lips. I often do that when in pain.

Which leads me to this — please, be kind and patient and compassionate toward others. That person walking slowly in front of you could be me. Someone who is walking slowly but it’s the best she can do because each step brings a fresh jolt of pain up and down her leg. 

Or maybe it’s someone whose stomach hurts. Or their head. Or their back. Or their feet. Or their shoulder. Or their elbow. 

I could go on, but you get the idea. 

And, one more thing – this year, I wanted to end the post introducing you to an alternative way to talk about pain. Most of us have experience with the (dreaded) pain scale that depicts faces on a 1-10 scale. And if you haven’t had personal experience with this scale (wonderful for you!), it’s most likely you’ve seen it hanging on the wall in an exam room.

Christina Irene, a hidden disability advocate, speaker, and author, has developed what she calls the “Splat” system. As she writes, “Splat is a system of communication for people with chronic illnesses, mental health diagnoses, and other hidden disabilities. Our conditions are often a ‘moving target,’ meaning we never know how we’re going to feel from one day to the next. The one certainty is: Every day, we feel like we’ve been run over by something.” Check out her website where she has a whole page dedicated to the Splat system, with resources you may find helpful.

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.

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.