Living with a chronic illness is hard. Living well with a chronic illness is even harder. It takes mental and emotional strength. Courage and resilience. A sense of humor. Hope. A positive attitude. Adaptability. Faith helps. So do emotional support and community. And a reason for being.
I think people who live well with chronic illness ought to be celebrated like Olympic athletes. Their unsung accomplishments are remarkable.
Think of it: Beginning each day anew requires grit, determination, and perseverance to push through pain, illness, limitations, depression, bodies that don’t work well, brain fog, disappointment, or depression. Then, the next day they do it all over again.
It takes remarkable courage, as well, to keep moving toward an uncertain future whose only certainty is that things may get worse. It takes perseverance to devise new ways to do what we did before and can no longer do in the same way. It takes a sense of humor to laugh at ourselves and the ridiculous and to lighten the load.
In addition to all that, it takes emotional strength to let go of what we have lost and move beyond our grief, and wisdom to know the proper balance between telling others our struggles and keeping them to ourselves.
Those with chronic illness demonstrate unseen strength and courage, silently doing things every day that others neither see nor imagine. And those who do this with graciousness, kindness, and good humor are even more remarkable. There ought to be awards given to such people.
With that said, if you have a chronic condition or long-term illness, claim the strength, courage, adaptability, and resilience that gets you through and makes joy possible. These are superpowers. When you fall as you will, remember that this has happened before, and you got back up. You can, again. You’re a survivor and a role model.
Lastly, if you know someone who lives with a chronic condition, notice the silent challenges and accomplishments of their everyday life; their strength, courage, adaptability, and perseverance. Be inspired by the model of their life and tell them so. Be grateful to know such people. Those who live well with a chronic illness are a gift to this generation and those to come.
If you’re looking for happiness, hope, and inspiration, come back another day. This isn’t it. One of the first rules of good writing is honesty. So, here it is. This post is about living honestly on those days that don’t feel very good.
As I have written recently, the last few months were difficult health-wise and turned me into a hermit. This extrovert makes a horrible hermit. I feel isolated and depressed. It shuts down my voice. I feel invisible, little, and useless to the world. Even moments of joy, laughter or appreciation of beauty are fleeting. I reach out to others with goodness when I can, but even that feels momentary. It’s been frustrating, to say the least.
I lost my voice and coughed constantly. My lung capacity dropped 40% again, so I had little energy for anything and was barely able to exercise or walk down the block. I felt crummy. My two conversation groups disbanded. Life became so boring I felt I had nothing to say to anyone. I trusted if I kept working the program of medication, rest, gradual increasing activity, and trying for a positive attitude I’d eventually return to a fuller, more meaningful life again. But in the meantime, it was uninspiring to write or talk about my life. It isn’t the kind of stuff I want to share with anyone. After all, who really wants to hear it?
Like many people with chronic illness, I have good days and bad, and some that are just ….. there. There’s not much to say about them except they’re frustrating and not how we want to be living. Some days are just like that and there’s nothing to do about them.
For myself, I hate to share how I am doing at such times. I feel like I’m whining and complaining. I don’t want pity or sympathy, advice or problem solving, well-meaning as they might be. I don’t want to have to take care of listeners’ discomfort with the unpleasantness of my life and the vulnerability of theirs–I have enough on my own to take care of. I don’t want people to tell me things will get better, or to look on the bright side, or to have faith, or to say they understand how I feel. Unless they’ve actually been in my very situation, they don’t know how I feel.
Sometimes I don’t know what I want from others, I just know life stinks and is boring and frustrating now. I just want the people I’m speaking with or those reading what I have written to be O.K. being uncomfortable, to know they don’t have to fix me, and to recognize that even people they respect and admire still have crummy times but that doesn’t mean we’re going to stay in that space forever or jump off a cliff. I want people who are uncomfortable to know it’s O.K. to be uncomfortable, but please don’t inflict it on others. Just listen, accept the crumminess of it, and respond with a version of “That really sucks.” Yes, it does. For me, and I think for many people with chronic illness, that’s all we want.
Because I don’t want to sound like a whiner or to add to others’ discomfort, I withdraw into myself and retreat from others when my life is crummy. Taking care of other people’s discomfort–or even having to listen to it–takes too much energy and gets too depressing. I don’t want to build friendships on the dishonesty of pretending my life is something it isn’t, so I withdraw.
Likewise with my writing. Anything I write that doesn’t come from an honest place in myself is noticeably hollow. The dishonesty is transparent and uncomfortable to readers. But if I write honestly at those times, it sounds depressing. So, I stop writing in order not to seem depressing. This time, after a week of finally trying to write an up-lifting, helpful, insightful post and finding every attempt deadly boring and useless, I decided to go for honesty.
Even though I hesitate to write this blog post, here it is: honest. The reality is that just because life is crummy today doesn’t mean it will be tomorrow. And if tomorrow is wonderful (as was the weekend I spent with my children and granddaughter recently), another crummy day is around the corner. That’s how life is with chronic illness, or grief, or care-giving, or aging, or any number of other types of unpleasantness. Some days are like that for us.
Please don’t try to fix us or give us advice. Don’t worry too much about us or give us too much sympathy. Agree with us that it stinks, it sucks, it’s lousy, that it is probably really frustrating and maybe even unfair. It is all those things. Some days are like that. And then we’ll move on in our conversation and our journey. After all, unpleasantness is just part of life.
Photo by Barbara Anderson outside Hailey, Idaho, May 2012