What’s It Like to Live with Chronic Illness? Part 1

Jun 11, 2019

Hello dear ones, it’s Annette, your sister in sickness here today to reflect on the question “What is it like to live with chronic illness?”  The Centers for Disease Control says that 6 in 10 Americans have a Chronic Disease and 4 in 10 have two or more; so the majority of us are living the answers to this question.  Are you one of us?

Have you ever been on a difficult hike and thought you were nearing the end?  You believed you had the reserves to make it but those are now used up and you’re pushing well past what you imagined it would take to reach your destination?  Surely you must be close – right?  I mean, this has turned into a slog…  Just putting one foot in front of the other is getting harder and harder.  Will this ever end?!

For me that description captures some of what it’s like to live with chronic illness.  The state of living in perpetual pain and exhaustion.  Always having to push well beyond what I feel capable of and knowing that any reserves I had are gone - were  gone years ago.  Regardless, I must keep pressing on day after day.  It’s exhausting and demoralizing because, unlike a hike, there isn’t an end in site or some glorious destination where I get to stop enjoy the view, head down-hill, and have a finish line.

What I’ve learned is that energy and time are my most precious natural resources.  That bears repeating: energy and time are my most precious natural resources.  Being judicious about how I spend them is central to how I take care of myself.  Imagine that someone without chronic illness, or chronic pain, woke from a refreshing night’s sleep with a fully charged battery – like the one on our cell phones – with 5 bars of energy to expend throughout the day on the business of living.  It might take one bar to get through the morning routine with the family: breakfast, lunches packed, everybody dressed, out the door, dropped off at school, and getting to work.  Eight thirty a.m.: four bars left.  Now she goes to some meetings, has to handle a stressful situation with an employee and goes out to lunch with a friend - one more bar down (it would have been 1.5 because of the stress, but lunch with a friend energized and filled her up so she gained that 0.5 back).  You get the picture. 

Now let’s consider someone managing chronic illness and/or pain.  She may wake after a typical night’s sleep with only 2 bars of energy to expend for the day and taking a shower might take a whole bar, getting kids fed and dressed might take both bars, making a meal might take both bars, seeing a friend might take a whole bar and while the time with the friend does feed her and feel necessary, it depletes her energy and increases her pain.  It is in this context that she has to determine how to prioritize those precious few bars each day – this is the struggle: how to get some things accomplished and still carve out some quality of life?

Experiences of chronic illness vary widely.  Chronic illness and their impacts vary widely.  AND, with most chronic illness there are better days and harder days, so I’ve called this post Part 1 because we’ll circle back to this question and address it from different vantage points.  This is just a glimpse into some of my broad and immediate thoughts and responses to the question “What is it like to live with chronic illness?”  What about you?  Post your comments or send me an email.  I’d love to include your answers to the question in future posts.  Thanks for your time and feedback.  Be well.

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