Stepping Out of the Long Covid Shadow

(Not intended as medical or therapeutic treatment or advice)

Long Covid comes with a long list of names:

dysautonomia/POTS, MCAS, mitochondrial dysfunction, gut dysbiosis…

Each diagnosis attempts to explain something that happens in our bodies, but none of them capture the truth of what we live.

Diagnoses are words that can feel distant, clinical, and incomplete.

Even when we share them with doctors, we are met with a shrug or a polite, “Okay… what would you like me to do?”

At first, I believed that receiving these names would bring understanding. That the world would see me if I could just hand it the right words. But what I found is that diagnoses often create distance between the human living inside the body and the system that is supposed to help. Labels define a condition…but they don’t define us nor help us be seen.

The Human Beyond the Label

We are not our diagnoses.

We are not lists of symptoms or test results.

We are the humans who live in these bodies.

We are the hearts that keep hoping.

The minds that keep searching.

The souls that keep loving, even when our days are interrupted and our nights are relentless.

Stepping out from behind the labels doesn’t mean denying our reality.

It doesn’t erase the challenges or the fatigue, the flares, or the moments when the body feels impossible.

It means recognizing that we are more than any condition can describe and deserve to be supported.

For years, I thought I needed the diagnoses to be seen. But what I learned is that being truly seen requires telling the full story of the human inside the conditions.

Not a sanitized version. Not a clinical report. Not only the words that medicine can measure.

The full, uncensored story of how it feels to live in a body that is unpredictable, overwhelming, and alive with its own language.

Stepping Into Visibility

Being seen…by ourselves, by others, and even by medicine…begins with reclaiming our story.

I began doing this by journaling everything I was experiencing:

• The moments of exhaustion and paralysis, paired with moments of hope.

• The sensations my body could not control: heart palpitations, buzzing, flares.

• The ways my nervous system, immune system, and gut communicated to me.

And then, I learned to bring my story into the world. Not as a set of symptoms, but as a life lived fully inside a body that the world often refuses to see.

At appointments, I started handing doctors my uncensored summary and saying:

“This is what it is like to live in my body. Please read it. Please see me.”

Stepping out from behind the diagnoses is not easy. It takes courage to show the human beyond the labels. But every time we do, we reclaim part of our life that was hidden behind words on a chart.

Journaling Prompts to Reclaim Your Humanity

One of the most powerful ways to step out from diagnoses is to write your story. Allow yourself to explore without censoring:

• What does it feel like to live in your body today?

• What emotions come up when you think of your diagnoses, symptoms, and real world problems?

• How have these conditions shaped your life, and how have they not defined it?

• Where have you experienced moments of hope, love, or strength despite the challenges?

• If you could tell someone exactly what it is like to live in your body, what would you say (the unedited version)?

Once you have written freely, create a summary of your lived experience. This is not for others to interpret - it is your story, told by you. Create a version that fully expresses the daily life you live and bring this to your next appointment. Invite your doctor to read it while you are there instead of verbally answering all of their questions first. Oftentimes they want to just have a verbal explanation, but I’ve given my written summary and asked them to read this and they actually pay more attention this way.

Doing this, you step into advocacy, visibility, and humanity at the same time.

Looking Ahead Future Blog Post: MCAS and the Next Step

Next week, we’ll explore MCAS more deeply…how it shows up, how unpredictable it can be, and how medicine often doesn’t tell you what really has been happening… We will be stepping out from behind these symptoms allowing us to understand and respond to our bodies with clarity and care.

Remember: the goal is not to reduce your experience to a label, nor to bear the burden of proving yourself.

The goal is to see yourself fully, to reclaim your story, and to step boldly into the human life that exists behind every diagnosis.