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Chronic Illness Is Isolating. Knowing You All Are Here Makes Me Feel a Little Less Alone.

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As someone with multiple chronic illnesses, I often struggle with loneliness and isolation. On a particularly isolating Saturday night, as I curled up in bed with pain, exhaustion, and anxiety pulsing through my body, I thought of all of you and felt a little less alone. I hope these words help you feel a little less alone too.


*Takes a long, deep breath.* With my eyes closed, I feel my brain and body shudder. It’s not a big shudder, like jumping after a loud clap of thunder or twitching when you spot a spider in the corner of a room. It’s smaller, subtler, more difficult to hold on to — like that feeling you get walking into a middle school dance wondering if anyone will like your outfit or if your $10 updo will pass for the ones your friends got at the real salons.

I close my eyes, breathe in deep, and in the space between the inhale and the exhale, I do my best to capture the pesky buzzing fly of emotion and sensation pulsing through my body. This has become my ritual. This familiar yet clunky dance of metronomed breathing rests in my body as if my thoroughly white, midwestern self was taking a salsa class for the first time. I feel the beat, something deep inside me recognizes the cadence of the music, yet I can’t seem to find the steps and connect my body’s instincts to the necessary outputs of movement.

You might be wondering: what in the world is she talking about? This, my friends, is my average Saturday night with chronic illness and anxiety. Here I am, writing this to you, as I lay in bed, staring at the wall, greeting the regular, yet mildly intrusive visitors that are the feelings my body experiences when anxiety comes to town.

It’s tough to say why these visitors decided to yet again greet me, especially when I just saw them earlier today. I spoke with them a few hours before during my drive through the mountains near my home in Colorado. My body said a rather unpleasant hello to these unwelcome visitors when the increasing altitude triggered a headache and lightheadedness, and I wondered if this was a normal bodily response or a POTS fainting episode that would be rather unideal while driving 75 mph down the highway. They tapped at my window later that day when I returned home and, after collecting my mail, I found I’d acquired an unexpected bill from my recent surgery. And they slid into my DMs in the evening as I scrolled through Instagram and found myself longing for the able-bodied life my friends seemed to be enjoying, the life I used to have 10 years ago before I got sick, and my body started to change.

I know what and who these Saturday night sensations are — they’ve been around long enough that we have inside jokes. And can hear my angel-on-the-shoulder therapist quietly whisper, “let the sensations move through your body.” Yet despite the familiarity and advice, I can’t help but feel both a little stuck and a little curious if there’s anyone out there on this Saturday night lying in bed stuck in a weird body glove of sensation too.

If you are out there: I hope you know you’re not alone. I hope you know your chronically ill body is sweetly and subtly caring for you. I hope you know that your fuzzy little fear monster is trying to protect you in the only clunky, annoying ways it knows how. I hope you know that medical-bill-induced financial stress is nothing to be ashamed of. And I hope you know that your story, your experience, and the things you feel in your body are real.

Maybe that’s what I’ll share with my anxiety house guests tonight: that in the midst of their company, I’ve also found yours. I’ll let them know that in between their visits, I also had my own adventures, like that moment when I was lying on my couch and noticed the sounds of crickets outside and thought about happy memories of summers in Michigan. Or that other time when I was walking next to a river in Vail and was more captivated by the beauty outside my body than the chronic pain within it. Or even now, in this very moment, when I’m reminded that, even though I can’t see you, you and others like you are out there. We Spoonies exist and are real and vibrant and strong and compassionate and tender and brilliant and can bear witness to parts of one another that few others can.

So yea, my nuisance neighbors are still here pushing their way through my tired little nervous system. But, I’m glad that for this Saturday night, their presence isn’t the only company I feel.

Image provided by contributor.

Originally published: September 6, 2022
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