POTS, Learning to Live in a Body Unrecognized

My Chronic Life: Entry One

There was a time when I moved through my days without thinking about my body at all. I trusted it without question. I had always been active, grounded in movement through yoga, climbing, hiking, and life with horses. My body felt steady, reliable, and strong; like something I never had to second guess.

I could wake up feeling rested, go where I needed to go, take care of what needed to be done, move freely through a yoga practice, rock climb, run alongside my horses, and keep up with my kids without ever wondering if I would have the energy or ability to follow through.

Looking back, there was an ease in that I didn’t fully recognize at the time. I didn’t realize how much of my independence was rooted in that quiet trust in my body until it began to change.

Now, there is a level of awareness that never turns off. Before I stand up, I think about it. Before I walk across a room, I assess how my body feels in space; whether I feel connected to it or slightly removed. Before I leave the house, I weigh the cost, not just in the moment, but what it might mean for the rest of the day, the next day, and even the days that follow.

Everything feels calculated. In some ways, having an analytical mind helps me navigate this, but it has also taken something from me; the part of me that used to feel spontaneous, free-spirited, and lighthearted.

There are mornings when I wake up feeling completely disconnected from my body, a heaviness that warns me to move cautiously. Other days, it hits without warning. Walking from the living room to the kitchen can feel like navigating a rock climbing route. I have to focus on telling my feet to take one step at a time, sensing where they land, while keeping a micro-bend in my knees to prevent buckling and holding back the fear that I might collapse.

Standing upright for more than five or ten minutes spikes my heart rate as if I’m running a marathon and sends my blood pressure plummeting, leaving me dizzy, weak, disoriented, and struggling to stay upright.

There are quieter challenges that no one else sees: my autonomic dysfunction brings digestive irregularities and sudden, urgent signals from my body’s rhythms, constant reminders that even ordinary moments can turn unpredictable. These hidden symptoms shape my days in ways that are invisible to others, leaving me to question my long-term independence and my body’s ability to regulate itself.

I have been diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, and Orthostatic Hypotension, which gives names to part of what I experience. Yet many questions remain unanswered. Over the years, I have consulted multiple specialists across several regions, exploring issues like small fibre neuropathy and the possibility of underlying conditions such as Ehler’s-Danlos Syndrome or Sjögren’s syndrome. For now, much of my life exists in that space of uncertainty, between specialist appointments, tests, and possibilities.

If there’s ever a forced lesson in getting comfortable with the unknown, it’s illness. There is a quiet fear in not being able to predict your own body: not knowing how far you can go on any given day, not knowing what will trigger a setback. Even ordinary decisions feel heavier than they should.

What has been harder than I expected is how much this has changed the way I live. I have to think about every movement before I make it. I must pace myself in ways that don’t come naturally to a self-proclaimed busy body. I have to stop before I want to, rest when I would rather keep going, and constantly weigh whether something is worth the risk of overexerting a body that can’t keep up with my mind.

That kind of adjustment is not just physical; it is more mental than anything. It requires accepting a version of myself I never anticipated becoming.

There is a level of grief in this experience, a quiet, ongoing awareness that I can’t move through life the way I once did. The independence I’ve always carried so naturally now looks different. At 38, after a lifetime of being capable, strong, and self-reliant, it is not easy to slow down, to ask for help in ways I never have before, or to recognize limits that most people my age may never know.

Some days are handled with more grace than others.

There are moments when I feel steady, when I can meet my body where it is and move with it instead of against it. And there are moments when it feels overwhelming; moments of frustration, discouragement, and physical and mental exhaustion from having to think about everything all the time. POTS is mostly a silent condition, and I often try to hide my struggle from family and friends. I have always valued my strength and independence and relinquishing even a piece of that has proven to be the greatest challenge so far.

I am working on improving my ability to ask for help, learning how to live in the balance between independence and interdependence.

My mantra has become: meet my body where it is. Even when I wish it were different, I strive to celebrate the small wins; stepping outside on our farm, breathing in the fresh mountain air, and letting my nervous system settle with the rhythm of the natural world. Slowing my breath when everything feels off and remembering to rest before I reach the point of depletion.

None of this comes naturally. It is something I am learning and working to improve each day. There is no clear path, no moment where everything suddenly makes sense, just constant adjusting, patience, self-control, and quiet resilience.

If you are in a place like this too; whether living with a chronic illness, still searching for answers, or simply trying to understand a body that no longer feels predictable, I want you to know you are not alone. Even in the uncertainty, the fear, and the grief for a life once lived.

I don’t have all the answers, but I do know this: adaptability and acceptance are the necessary tools for navigating this experience.

I’ll be sharing more of my journey here on this blog each week; writing about the challenges, the small victories, and the lessons I continue to learn. If you’re navigating a similar experience, or simply want to connect and share stories, I invite you to reach out.

You are not alone on this path, and sometimes the smallest connection can make the heaviest days feel lighter.

"Exhaustion becomes your constant companion. Living with POTS or chronic illness means navigating a world that moves faster than your body allows." - Kelsey Pilling