What Helps Me Accept the 'Chronic' Nature of My Chronic Illness

There will be time, there will be time
To prepare a face to meet the faces that you meet;

There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;        
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions

— From “The Love Song of J. Alfred Prufrock” by T.S. Eliot

The word chronic comes from the Latin word “chronos” for time. Chronic illness simply means long-term illness. It’s a marathon on every level. What do I think is the hardest aspect of chronic illness? Well, it’s not the lack of understanding from society at large. It’s frustrating, but it’s something we can actively work to change. And it is not the endless symptoms, medications, treatments and consultations with medical professionals. That’s sheer endurance, but not the worst aspect of this life. It’s not even the heartbreaking armchair view of watching the fallout of your chronic illness on your family and friends. It’s something more insidious.

For me, the hardest part is the “chronic” nature of a chronic illness. Can you imagine getting sick and being told you will probably never be well again? Can you imagine facing challenges today, tomorrow and all of the tomorrows beyond that? “There will be time, there will be time,” T.S. Eliot wrote in his sad poem, “The Love Song of J. Alfred Prufrock.” So much time. Elastic, interminable, confounding time.

It will take a great deal of your energy, because you might learn early on people don’t always want to hear the truth about your chronic illness. They’d rather see you smile so they can move on. And as time goes on, you might prefer that, too. It’s so much less soul-destroying than trying to explain your illness with a chasm of disinterest staring back at you.

You might spend eons deep in your own thoughts and find entire worlds there. Ideas and hopes might be born and end before you’ve managed to make a step. But you’ll also find other ideas, dreams and pursuits in there that you’ll nurture. The distraction of creating things might just lift you from the fog of your chronic illness for a time. You may even create an entirely new you. A phoenix from your ashes. And there will be time for all that.

So, it is time. That’s the hardest thing about living with a chronic illness to me. Of course, the best advice for handling what feels like the tyranny of time lies in acceptance. But acceptance can be hard to find. Sometimes it flies away in the face of the realities of illness. It must be held like a butterfly, so you don’t destroy its wings. Lightly and with wonder.

Have you found acceptance as you travel across the days of your chronic illness? What helps you?

For me, it’s reading poetry, writing, thinking and creating.

It is letting the “slow” seep into my bones and watching the storms roll over. It’s letting go in tiny increments of the girl I used to know. And believing, even when the sands are trickling faster through the hourglass, that there will be a “time for you and time for me.”

Rachel F Cox the mighty
Drawing by Rachel F. Cox

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Dysautonomia

When I Hear 'At Least It's Not...' About My Chronic Illness

When you’re ill, particularly chronically ill, you’re inundated with advice from well-meaning family, friends and even, on occasion, complete strangers. I thought I’d dedicate this post to the one that seems to be a favorite of the well-meaning brigade, and one that really ticks me off. “Well, at least it’s not [insert disease or life [...]

Why My Boss’s Text About My Chronic Illness Is Such a Big Deal

It was a random day and time that I received the text. It was a link to the website “But You Don’t Look Sick” by Christine Miserandino. Specifically, it was to the page describing the Spoon Theory, which describes what it is like to live with a chronic illness, especially an “invisible” one. In a nutshell, Christine [...]

Why, No Matter What, I'm Not My Chronic Illness' Victim

Dear Dysautonomia, Some of my friends have pet names for you. But I’ve never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends. I wouldn’t. I’d like us to be strangers. I’ve had weaknesses in an area of my nervous system since I was [...]

To Each Illness I've Had to Fight, This Is What You've Taught Me

Dear Illnesses, Enthesitis– You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. But, for all you took away from me you have given me just as much if [...]