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When Self-Care Isn’t a Spa Day: Mental & Spiritual Survival with EDS, POTS, and Chiari

By Antonia @ UnremarkableMe | Published June 2025


If you’re reading this, chances are you’ve been handed the deluxe edition of chronic conditions—Ehlers-Danlos Syndrome (EDS), Chiari malformation, POTS, or some other dysautonomia surprise bundle. A trio of diagnoses so rare and complicated that explaining them to a new doctor feels like a second job—one that pays exclusively in blank stares and printouts from NHS Choices.

Living with a complex condition isn’t just about wrangling symptoms. It’s navigating an entire existence where your body refuses to play by the rules—except the ones it’s made up itself. It’s confusing. Exhausting. And sometimes, so ridiculous it borders on parody (why does standing up feel like Olympic weightlifting some days?).

This is where mental and spiritual wellness come in. Not as some glitter-dusted cure-all, but as survival tools—practical, accessible ways to hold onto yourself while your nervous system does interpretive dance routines you never auditioned for.

Let’s talk about how to steady your mind and soul—even when your physical body is trying to ghost you.


Mindful Breathing: AKA, Remembering Not to Hold Your Breath in Frustration

Breathing: you’re doing it right now, yet chronic illness has a way of making even that feel like a struggle. Pain, fatigue, stress—all of it can lock up your diaphragm and put your nervous system on high alert.

Deep, structured breathing helps override that panic response and reset your internal dial.

Try This:

  • Inhale for 4 seconds

  • Hold for 4 seconds

  • Exhale for 6 seconds (or longer if you can)

  • Repeat until your brain stops glitching like a Windows XP pop-up

Why It Works: Activating the parasympathetic nervous system helps lower blood pressure, reduce stress hormones, and bring your heart rate back from “startled meerkat” mode.

Source:

Visualization Meditation: Because Waiting Rooms Are Not Zen Gardens

A peaceful beach won’t cure EDS. But closing your eyes and imagining one might just keep your brain from launching into full fight-or-flight when you're stuck under fluorescent lights for the fourth hour running.

Try This:

  • Close your eyes (assuming you’re not in the queue at Tesco)

  • Picture a warm light flowing over your body, easing tension

  • Or imagine an alternate reality where your GP listens for longer than seven minutes

Why It Works: Guided imagery has been shown to reduce pain and anxiety and improve focus—especially when the body is under stress.

Source:

Positive Affirmations: Sincere, Not Cringe

We’re not talking Pinterest platitudes. We're talking survival self-talk. Saying “I am strong” when your body feels like it’s rebooting on Windows 95 might not land—but something like:

“I’m managing this circus one act at a time.”

That’s real. That’s helpful.

Why It Works: Neuroscience shows that repeated affirmations can rewire negative thought loops and improve resilience during ongoing stress and illness.

Source:

  • Psychology Today. The Neuroscience of Affirmations and How They Rewire Your Brain


Grounding Exercises: When Your Brain Floats Off Without You

If your nervous system’s gone full ping-pong (thanks, POTS and Chiari), grounding helps you stop spiralling and return to now.

Try This:

  • 5-4-3-2-1: List 5 things you can see, 4 you can touch, 3 you can hear, 2 you can smell, 1 you can taste

  • Press your feet flat and imagine roots growing down

  • Focus on textures (blanket on your lap, cool glass in your hand)

Why It Works: Grounding activates sensory awareness, anchoring you in the present moment. This can interrupt dissociation, dizziness, or panic spikes.

Source:

  • National Alliance on Mental Illness (NAMI). Grounding techniques for anxiety and stress


Journaling: The Therapist Who Doesn’t Bill You

Journaling isn’t just for your teenage self. It’s a powerful way to offload stress, track symptoms, and document the nonsense for the next doctor who says, “Hmm, that’s unusual.”

Prompts That Actually Help:

  • “Today sucked because...”

  • “Symptoms I noticed when X happened...”

  • “Dear Autonomic System: Please sort yourself out.”

Why It Works:Research links journaling with improved emotional regulation, reduced stress, and even enhanced immune function. And it gives you a space to be radically honest without judgment.

Source:

  • University of Rochester Medical Center. Health benefits of journaling


Flare Day Survival Kits: Because Sometimes Your Body Says “Nope.”

On bad days, your to-do list shrinks to one item: Cope. Having a flare kit ready means you don’t have to scramble while half-functional.

Build Yours with:

  • Cosy distractions (comfort TV, audiobooks, playlists you love)

  • Pain relief (heat packs, medication, weighted blanket if safe)

  • Easy snacks (because cooking = betrayal on flare days)

Why It Works:It reduces decision fatigue and lets your brain go offline without losing your comfort zone.

Source:

  • Healthline. How to make a chronic illness flare-up kit


Professional Support: For When Journaling Just Isn’t Enough

Self-care has its limits. Sometimes you need someone trained to help you untangle the mental mess. CBT and ACT have shown strong outcomes for chronic illness-related depression, anxiety, and fatigue.

UK Support Links:

Bonus Context: EDS, Chiari, POTS, and That 5mm Controversy

For those living in the intersection of EDS and Chiari, you may already know about the so-called "5mm rule"—a controversial diagnostic cutoff for Chiari malformation that’s left many patients underdiagnosed. Add in POTS and the complex autonomic dysfunction it brings, and it’s no wonder so many of us feel lost in the shuffle.

Mental wellness in these cases isn't a luxury—it's a lifeline. Advocacy groups are pushing for clearer diagnostic standards, but in the meantime, these tools can help reclaim even a little peace of mind.

For more on this topic:

Final Thoughts: You’re Doing a Lot, and That Deserves Recognition

Living with EDS, POTS, or Chiari is like playing a game on hard mode—except you didn’t sign up for the game, and there’s no pause button.

But here you are. Showing up. Figuring it out. Building tiny routines and moments of calm in the middle of absolute bodily nonsense.

That deserves recognition.

So breathe. Rest. Repeat. And when you’re ready, keep going.

You’re not failing. You’re surviving. And that is more than enough.


 
 
 

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