(almost) nobody wants to be sick
(almost) nobody wants to be sick
living with not-the-worst chronic illness and it's greatest lesson
Dragging myself to the end of week 5, the despair settled dense and heavy in my breast. Will I ever get truly healthy again or is this my life now? Will my partner eventually regret choosing me because of my chronic illness? Is it really as bad as I’m thinking it is? What if this is all in my head?
The first week and a half was rife with insomnia. Trouble falling asleep and trouble staying there. After too many nights of compromised sleep I start to feel a quiet panic well up. What if this goes on forever? Your brain starts to think it’s going to die, even when it knows it isn’t true.
Then I had another diverticulitis flare. Stabbing pain that is so intense I am usually bedridden for one to many days. Getting up to get a snack from the kitchen is a battle. Walking is hard, my mind is dulled, and interacting with others is heavy and tiring.
After the worst of the pain subsided, a constant intestinal cramping and gut discomfort persisted for the following 2+ weeks. Being in pain is tiring. Trying to heal is tiring. Physical activities that usually help me feel vital and strong were off the table because movement makes the pain worse and my energy is too low from trying to mend itself.
Then my partner proposed to me* - which was the opposite of sick - but took me on a wild ride of so many big emotions (on an already empty tank) that I was completely wrung out and exhausted afterwards. I slept for an entire day.
(*Another lovely story for a different sunnier letter.)
The next week I was slogging through unrelenting fatigue. Naps didn’t help. Full nights of sleep didn’t help. Trying to relax, read, and prioritize rest didn’t turn the energy deficit around.
When the symptoms go on for so long, I forget what Well feels like. I forget how my imagination soars and my curiosity dances when I am vibrant with life. I forget how big and beautiful the world is. My world shrinks to the size of my apartment and my job. When those are still too much, down to the scale of my room and my own thoughts.
Then I manage to get one good nights sleep. Then another. And then ANOTHER!
WHAT EUPHORIA IS THIS?!
Feeling this good is a high. I can cook myself food?! I can interact pleasurably with housemates and friends?! I can text people back, putter around my garden, walk the dogs, and make my bed?! I’m a machine of productivity at work, remembering why I care so deeply about it and why all of the hard labor will be worth it when it pays off. I can’t believe how damn beautiful life is!
I can’t fully capture how solidifying and comforting it is to realize that I wasn’t making it all up. That I’m not a hypochondriac. I’m not meeting some unconscious need to attention. The sleep addled brain becomes such an unreliable narrator. I hate being sick. I hate how people treat me. I hate how trapped I feel by my weakness and exhaustion and my limited capacity. I hate the thought scape I can’t seem to break free from. I hate how small and boring my life gets.
With just a few nights of good sleep under my belt I run the risk of getting too cocky. I’ll get overconfident and operate as though this new, energy-rich, creative, curious state is impervious. Why don’t I apply to grad school? why don’t I clean the whole house? Why don’t I make plans with 12 friends over the next 5 days?!?! I mean why not? Look at me go!
While the emerging wellness is real, the overconfidence is a bad, bad guy. If I’m not careful, my hard won return to healthiness will fall away because - let’s be honest y’all - a body and human needs a lot more than three nights of good sleep to be well. But when you haven’t had it for five weeks, holy cow does it feel like a miracle.
Living with chronic illness sucks. I’ve found it requires constant diligence, management, and discipline. which in an of itself is tiring. Plus, if that management and hyper-vigilance causes stress and anxiety then you’re compromising your immune system anyway.
At least for now I feel much better. I feel more like myself. I feel hopeful.
May it last.
What I’ve learned from the last several years in my own health journey and watching more and more people develop chronic illness is that the individual way we approach health simply does not work well.
We need community. Fiercely. We need to experience social flexibility to cancel plans and feel loved and encouraged, not guilty. We need our friends, family, and colleagues to CHEER US ON when we say no to commitments that we don’t have space for. We need to have each other over for dinner so that we get a break from cooking and cleaning for a night because someone else has got it covered, why don’t you just sit back and relax and catch me up on your life? We need our friends and neighbors to say ‘yes’ to our offers to help so that we can feel more connected and meaningful in your lives and then you get a clean house or a new fence or a bunch of landscaping help out of it. We need meal trains, work parties, and cups of sugar. We need to offer strangers help with carrying their bags and say ‘yes’ more often when someone wants to help us with ours. We need to offer our old clothes, tools, jewelry, and useful items to friends and neighbors so that they can save on expenses and get to experience the joy of thinking of us every time they pick it up.
When I am strong and healthy in my body, I love how it feels to help others.
We need to contribute to and experience a greater economy of generosity. Not from obligation but from everyone giving a little bit extra in than what is required and then we all get to experience more abundance, more support, more connection, and more stability. If we lean into supporting one another and giving more (in ways that don’t detract from our health or stability) these small moments build up. They disrupt exhausting and unsustainable norms of hyper-individualism as well as the extractive pressures of consumerism. Most importantly, they disrupt loneliness and diminish the sense of divide that seems to plague our communities - local, national, and international - like cancer.
I need you. You need me.
Help someone out today. Give to someone you might not otherwise slow down for. Or if your edge lies in the other direction, let yourself receive someone else’s generosity. Be radically connective. Be the community you wish you saw more of in the world.
Little Things:
An amazing episode sent to me by my housemate all about how consumerism hijacked taking care of ourselves, how it makes burnout experiences worse, and how to find your way out. Upon listening I immediately sent it out to 6 loved ones. It is a must-listen for every human.
A highlight from my week was finding a Ladybug stuck in our covered porch area, gently collecting her into my hands, and delivering her to the Honeysuckle growing through the hedge down on the corner, which is always covered in Aphids this time of year. I hope she ate until she felt like a Roly Poly.
I recently reconnected with one of my mom’s best friends from high school and she brought me these arresting peonies from her garden. Just fabulous!
Our garden is coming into it’s own. I had the pleasure of foraging these herbs from our yard and neighborhood.
Lemon Balm, Purple Dead Nettle, Mint, Oregano, and Garlic Chives! This little beauty for your ears:
With love until next time,
