The Sound of Chronic Illness Silence
Hey there my old friend.
During the early stages of acute illness, there is usually an outpouring of well-wishing prayers, inquiries, visits, cards, and maybe even casseroles. But as time drags on and the word chronic sets in, the loneliness can begin because bone crushing fatigue can make socializing unbearable, loud music can suddenly start to cause physical pain, wine time can become off limits due to liver problems, and coffee with donuts can get put on the food elimination list.
And, let’s face it, not too many modern Americans are that interested in gathering around your new current interests which might include things like making a more digestible spelt bread with your own hands, or how to grow home-grown pesticide free veggies; or your healing, chemical free, homemade, hair and skin oil recipe, or your newfound appreciation and gratitude for Azure Standard and Bulk Natural Foods, or your “zealous” love of Bible study in which you have learned to make spiritual sense of your suffering world, or your desire to dig a bit deeper into finding answers to your problems, or your appetite for devouring the latest research discoveries in order to learn what they are revealing about your illness. Let’s face it, most of your friends probably won’t even have the slightest inkling about how precious that home grown head of lettuce you gave them really was because big stores make it easy to have lettuce on demand. Plus, your friends probably didn’t watch you put a considerable amount of effort into growing that lettuce while PACING (taking lots of rest breaks) due to chronic fatigue. I’ve learned that things that are easy to come by aren’t usually as highly appreciated as things that are harder to come by, even if that harder to come by thing is something of higher quality. I couldn’t even give my delicious lettuce away when I first started growing it and ended up with an unexpected bumper crop. I did find other creative ways to use it up though. Home grown food just tastes better and comes with a lovely satisfaction that just can’t be bought at the big store. I’m sure the modern world will finally appreciate this concept if it ever slows down long enough to do so.
I’ve heard that loneliness and solitude are two sides of the same coin. When illness starts to help your list of friends get shorter and the silence from them to get louder, it can cause us, the chronically ill, to get more introspective and inward focused. This may or may not be a good thing, depending on how this is done. Inward introspection can be good if it helps you turn your loneliness into solitude.
Ideally, we should be comfortable with ourselves, alone or with others. If you are uncomfortable being alone, it means you are uncomfortable being with yourself without distraction, engagement, or affirmation from others…….. Consider solitude a time for self-reflection, relaxation, creativity, and personal growth. It can allow you to focus on your thoughts and feelings, gain clarity on personal challenges, and develop a deeper understanding of yourself. Solitude can also be a way to recharge and find peace amidst the demands and distractions of modern life, especially for introverts who may become over-stimulated and exhausted by too much social interaction.
On his good days dad was able to paint. I think he may have even given away more of his artwork and painted more paintings for others while he was sick and on chemo than he did before cancer interrupted his life. Focusing on others rather than yourself also helps a lot when you are sick, it kind of helps me alleviate feelings of self-pity that can creep in and threaten to take over. I’m no painter, but I did buy a box of crayons and a coloring book at one point when I was at my sickest last summer, and I was able to do some gardening on my better days (while wrestling with long-covid) using the PACE method, a method that cancer patients could possibly benefit from. Pacing is about learning how to properly utilize your energy when you do feel good so that you don’t crash and burn from overexerting your gimpy mitochondria while they are still damaged or beginning to heal. Each precious plant that I grew last summer was more enjoyed and appreciated than they ever were before. Each day that I was able to go outside and feel the sun on my skin and smell the earth as I dug into it brought more joy than I ever noticed before. Each butterfly and bumble bee I saw flitting around in my flowers made up for the fire ants that sometimes stung my feet and legs.
Is illness the place where your book begins? What if your illness is really just the beginning of something new and good trying to bubble up in your life?
Some of us with LC sleep disturbances are considering setting up 3am Zoom meetings since a lot of us are awake at that hour, but I sometimes get some of my best ideas in the still, quiet, early morning hours when something uncomfortable is going on in my body between 2 and 4 am. It’s a fun idea, but I’m not sure I’ll be able to make that Zoom call with all of the unwritten stuff I’ve got floating around in my head wanting to find its way out. Have you learned to embrace the solitude gift that illness can give to you if you let it? Let me know what you’ve done to help yourself learn to love solitude, in the comments, I would love to hear more about it.
Follow up educational reading-
Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again – Steven Phillips, MD (stevenphillipsmd.com)
Dr. Phillips was already an internationally renowned physician specializing in complex, chronic diseases when he became a patient himself. After nearly dying from his own mystery illness, he experienced firsthand the medical community’s ignorance about the pathogens that underlie a range of chronic conditions—from fibromyalgia, lupus, multiple sclerosis, chronic fatigue syndrome, and rheumatoid arthritis to depression, anxiety, and neurodegenerative disorders. And through his tireless investigation, he was ultimately able to put together the clues and save himself when his doctors couldn’t. Parish, too, watched her health spiral after twelve top doctors missed an underlying infection that caused heart failure and other sudden, debilitating physical and psychiatric symptoms. Ultimately, she was successfully treated by Dr. Phillips. Now, they’ve come together with a mission: to change the current model of simply treating symptoms, often with dangerous, lifelong drugs, and shift the focus to finding and curing root causes of chronic diseases that affect millions around the world.
Follow up educational viewing-
Best Wishes,
Stephanie
*Leaving Death in the Dust is a newsletter and is not a replacement for professional, regulated, medical, healthcare. This is informational and educational. Some of us in this community may have worked in the healthcare system, but we are not your medical provider and whatever you find here is not the establishment of a professional medical relationship or medical advice. **That is an MT behind my name not an MD.
Hi Stephanie,
Thanks so much for supporting my Substack. Wow!
COVID and Long COVID, yes.... there's been loneliness.
For our lives here in Vermont, it's been four years of largely being alone. From mandated isolation to concerns over becoming re-infected, we've felt it. Sometimes it's been more painful than at other times. But, in that we choose to live in a very rural area, we recognize that we are as much responsible for our isolation as are the conditions of society and the risks posed by new COVID, RSV or other viruses.
I do see some hopeful changes happening in the world around us. I can't quite put my finger on it. Maybe it's the collective disdain for much of social media, the collective experiences of isolation, the yearning for community. I find myself meeting or hearing about people who seem like pioneers seeking new ways to establish mutually beneficial and supportive relationships. I think that here at Substack, that we may be some of those pioneers.