Stop Fighting Your Body: Nervous System Care for hEDS and HSD

Adapted from Chapter 1 of When Your Body Needs More Care: A Practical Guide to Hypermobility, Connective Tissue Disorders, and Creating a Life That Works by Maggie Buckley, MBA, BCPA. Published by EDS Connective. Download the full eBook free →

If you've recently been diagnosed with hEDS or HSD, the urge to do everything at once can feel overwhelming: new terms, new appointments, new decisions, and a very real pull to fix it all right away. But moving forward well rarely begins with speed. It begins with calm, steadiness, and the kind of nervous-system regulation that makes it easier to think clearly, make decisions, and start building from there. That is where Maggie's first chapter begins.

Chapter 1: Calm Is the First Step Forward

When fear first rises, it can feel as though the only sensible response is speed — more research, more appointments, more solutions, more effort. But a body already under strain rarely settles through force. Before you add more tasks, more information, or more urgency, it helps to begin by quieting the system enough to see what is actually happening. Calm is not passivity, denial, or weakness. It is the first practical step in building steadiness, because it helps you notice what is already supporting you and what needs attention first. Before you chart a new course, you steady the boat you are already in.

This chapter is about helping your nervous system feel safer and steadier so you can build momentum. We'll talk about what stress does in the body, why getting stuck in "fight mode" can make symptoms louder and energy lower, and a few simple practices you can use anywhere to bring things down a notch.

If you're newly diagnosed, it can feel like you've been dropped into the middle of a storm: new terms, new appointments, new decisions — and a very real urge to fix everything right away. The frustrating truth is that lasting progress usually doesn't start with speed. It starts with steadiness. A more regulated nervous system gives your body and mind a better place to learn, heal, and make decisions.

From Fighting to Building

In healthcare, people often talk about illness like a battle: fight for your health, fight your body, fight the system. I understand why that language shows up. It can feel powerful in the moment. But it can also keep your body on high alert, as if danger is always present, even when the work in front of you is slow, steady, and deeply human.

If you're living with a heritable connective tissue disorder — or any chronic condition — this is not a short sprint. It is a long path with many chances to improve the quality of life. The community phrase "start low, go slow" exists for a reason: moving too fast can lead to burnout, symptom flares, and the discouraging feeling that nothing works.

You don't need to prove you're tough. You're already strong: you've lived in this body for a long time, and you've found ways to cope. Nobody understands your day-to-day experience better than you do. That lived knowledge matters.

Calm Is a Skill

When clients come to me for patient advocacy, one of the first things we practice is nervous system regulation. Not because calm is simply "nice," but because calm is useful. It helps you think more clearly, communicate more effectively, and respond to symptoms based on what is really happening — not just what your brain fears might happen.

A simple place to start is a cleansing breath:

• Breathe in slowly for a count of four.
• Exhale slowly for a count of four.
• Repeat 3–5 times.

As you try this, notice what changes — your heart rate, muscle tension, and how clear your thinking feels. Even a few breaths can create just enough space to choose your next step rather than react on autopilot.

Use Transitions to Practice Regulation

One of the easiest ways to build this habit is to pair it with transitions you already do every day:

• Room-to-room transitions: as you walk from the bedroom to the kitchen, take 2–3 slow breaths.
• Before and after calls: breathe before you dial; breathe again when you hang up to mark completion.
• After any focused task: take a few breaths before switching to the next thing.

Injury, Flare, or New Pain: Pause Before You Problem-Solve

When something suddenly hurts, your nervous system often hits the gas. That urgency is understandable — but it can also lead to mistakes: moving too quickly, grabbing the wrong support, using heat when ice would have helped (or vice versa), or spending energy chasing ten possibilities instead of the one you actually need.

If you can, try this sequence:

• Stop for a moment.
• Take 2–4 slow breaths.
• Assess. Is there bleeding? Swelling? A bruise forming? Are you dizzy? Is the pain changing as you breathe?
• Respond appropriately. Choose the simplest next right step — specific support, first aid, rest, or calling for help.

This pause is not "doing nothing." It's vagus-nerve-supported regulation — creating enough safety in the body to think clearly and conserve energy.

Why Fight-or-Flight Can Worsen Symptoms

In the wild, fight-or-flight is usually short-lived: danger passes, and the body settles again. With chronic illness — and chronic stress — that "always ready" state can become the default. Over time, constant muscle tension can lead to pain, and slower digestion can worsen GI symptoms and make it harder for your body to absorb the nutrients and hydration it needs for recovery and stability.

The goal is not to remove stress completely. The goal is flexibility: the ability to move out of fight-or-flight and back toward rest-and-digest when your body is safe enough to do that.

A Toolkit for Cultivating Calm

Regulation starts with noticing. That is the first skill. Pay attention to the early signs that your system is revving up — racing thoughts, a tight jaw, clenched muscles, shallow breathing, or a sense of urgency — and then choose one tool that fits the moment.

Breathing (fastest access)

Return to the 4-count inhale/4-count exhale, or simply make your exhale slightly longer than your inhale.

Movement and Vocalization

Visualization (building understanding and compassion)

Gently focus attention on the body area that feels "loud." The aim is not to judge or panic, but to understand what you're sensing and to separate threats from familiar sensations that are common for your body.

Guided imagery (finding safety through the senses)

If you like scripts or audio guidance, try a simple image such as a leaf on a branch. Imagine being that leaf: supported, connected, and anchored. Notice sensory details — warm/cool air, distant sounds, nearby smells. This kind of sensory refocus can help your nervous system return to the present moment.

Body scans (information without judgment)

With a steady breath (3–4 counts in, 3–4 counts out), slowly scan from the top of your head down to your toes. Notice sensations and alignment. Make small adjustments toward neutral, comfortable positions. Over time, this builds body knowledge: what needs support, what needs movement, and what needs rest.

These are accessible, self-directed practices. The more you practice when things are not urgent, the easier it becomes to use them when you really need them.

Conclusion

When you have more tools in your toolkit, the jumble of symptoms can feel less scary and less overwhelming because you have options. Each time you use a tool, and it helps, you give your brain evidence that you can handle what is happening. That sense of control can calm the nervous system and help create a steadier, less reactive cycle. In time, that steadiness becomes part of how you keep your footing when the water changes.

Keep reading: What This Diagnosis Means for You: hEDS, HSD, and Connective Tissue Disorders →

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