Making the Invisible Visible

Making Dysautonomia Visible

In October 2022, I was diagnosed with dysautonomia.

Receiving a diagnosis was, unexpectedly, a huge relief.

For a long time, I had been dealing with health problems without fully understanding why my body was responding the way it was. Finally having an answer gave me something I had been missing: an explanation.

A diagnosis did not make dysautonomia disappear. But it gave me the opportunity to understand my body better, recognize my triggers, and learn how to manage my condition instead of constantly wondering what was happening.

One of the biggest challenges I have faced has been fatigue and the lack of energy. It has changed the way I think about everyday life. Things that may seem simple or automatic can require much more energy than people realize, and I have had to become intentional about where I spend that energy.

I have also dealt with dysphagia, which has made something as basic as eating and swallowing something I cannot always take for granted. Intolerance to cold has been another unexpected part of my experience. These are things that may not be visible when someone looks at me, but they are very real parts of living with dysautonomia.

I am still learning.

There are days when I feel like I am getting better at managing it, and there are other moments when it feels like dysautonomia is winning. I have had to learn that managing an invisible condition is not about having everything figured out. Sometimes it means paying attention, adjusting plans, respecting my limits, and learning from my body along the way.

My faith in God has also been a fundamental part of this journey.

Through this process, I have gradually learned to recognize some of the things that can trigger my symptoms and, perhaps just as importantly, I have learned to set boundaries and become more intentional about how I use my limited energy.

I often think about the idea of “energy spoons.” Every day, we wake up with a certain amount of energy to spend. Some activities may cost one spoon, while others may cost several. Learning to manage those spoons has become part of learning how to live well with dysautonomia.

One of the hardest things about dysautonomia is that it is often invisible. You can look completely fine while your body is working much harder than anyone around you realizes.

That is why awareness matters.

I created this fundraiser for Dysautonomia International because I want to help support research, medical education, awareness, patient empowerment, and advocacy for people living with dysautonomia.

I am sharing my story not because dysautonomia defines me, but because it has changed the way I understand resilience, accessibility, and the importance of believing people when they tell us something is wrong, even when we cannot see it.

My goal is to raise $1,000 during Dysautonomia Awareness Month. Donations are currently being matched dollar-for-dollar through a $150,000 matching challenge, while matching funds remain available.

If you are able to donate, thank you.

If you cannot, sharing this fundraiser or simply learning more about dysautonomia can also make a difference.

Because invisible does not mean insignificant.

This October, I am choosing to #MakeNoiseForTurquoise.