invisible illness

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. 

It’s Hard Work

Posted on by Wendy Kennar
Each afternoon, I park the car near my son's high school and go for a walk in the neighborhood, before the dismissal bell rings. I usually walk for about ten minutes.

Last week was a “hard” week. 

I added quotation marks because I’m not certain that hard is the most accurate word to use to describe last week’s experiences. 

Let me tell you about it:

On Monday, I went in for my three-month follow-up with my rheumatologist. These appointments are rather brief, mainly because my doctor feels like things are “under control.” My current medication is “working” in that my inflammation levels have stayed more-or-less steady for the last year or two. (Again, the quotation marks because working doesn’t exactly represent my daily experiences.) From the doctor’s perspective, everything is going well. 

But it’s not.

Before he hurried out my exam room and into the room next door, I told Dr. P that I understand my labs look good in his eyes. But, I told him, I feel awful. Every. Single. Day. “So even though it looks like I’m doing great, I’m not,” I told him. 

He nodded. He told me all he can do is go by the numbers.    

On Tuesday, I had an appointment with my physical therapist, C. I haven’t been to physical therapy in over a month, because C had been on vacation for a while. However, I have been consistently doing my PT homework — daily walk(s), using my pedal machine twice a day, and working through my stretches/exercises every other day. 

C and I chatted while I used the armless-elliptical machine. He asked about my walking — the distance covered, the amount of time it takes. And I told him that my son told me it looks like I’m limping more than I ever have before. We talked about my treatment plan for the next few months. 

Because the reality is I am not an “easy” patient. (Again, easy may not be the right word.)

Doctors, in my experience, tend to focus on the labels — the diagnosis, the medication, the numbers. So my rheumatologist reviews labs and on his end, things are going well. Yet, each time I see him, I try to explain just how hard things have gotten. He knows I own a wheelchair. He knows how hard grocery shopping has become. He knows I wake up, every morning, already in pain. 

Likewise, as great as C is — I have worked with several physical therapists over the years and have never worked with anyone like C before! — I’m not the type of patient he is used to working with. I don’t have an injury that twelve weeks of physical therapy will help heal, for example. I don’t always experience pain in the same spot or in the same way. Some days are better than others. And perhaps most “challenging” is the reality —I will not get better.

Over the years, I have observed doctors and physical therapists become “frustrated” with me — through no fault of my own. The fact is I don’t have an easy-to-understand or easy-to-treat diagnosis. I don’t have a chronic illness that has a well-established prognosis. 

I get it. But that’s all out of my control. 

The goal, as I have told both Dr. P and C, is to work on strengthening my left leg and to maintain that strength as much as I can. Because ultimately I am trying to remain as mobile and independent as I can, for as long as I can.

It isn’t easy. 

But I’m working hard at it.

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)?

Surviving the Holiday Season with Invisible Illness

Posted on by Wendy Kennar

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.