invisible illness

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.