Your body has been writing you letters for years. You just couldn’t read them

What 66 years of undiagnosed neurodivergence and long COVID look like from the massage table

I am, by all measurable accounts, in good health.

My quarterly blood work comes back like a medical brochure. Cholesterol fine. Liver fine. Kidneys fine. A touch of Type 2 Diabetes, controlled with medication. My doctor is happy. I should be happy.

And yet I can barely walk to my kitchen without wanting to lie down.

The gap between the blood test and the body

Here is what my blood tests do not measure: the fact that my massage therapist, Mr Trung, says I am the worst client he has ever had. Truly. Everywhere he touches me—and I mean everywhere—I am in agony. He uses two-out-of-ten pressure and I howl like a dog that has been stepped on. He keeps finding hard, painful nodules throughout my muscles where blood has simply stopped flowing. Little stones of suffering, scattered through my thighs, my arms, my back. Tissue that has locked itself shut.

My blood tests say my organs are fine. They say nothing about whether my nervous system has been running at combat speed for six and a half decades.

A question worth sitting with

If you are reading this and you are over forty, and you have spent your life feeling like you are performing a role rather than living a life—if exhaustion is your baseline and you cannot remember what ‘rested’ feels like—I wonder if what I am about to describe might land somewhere familiar.

Because this is not a story about me being ill.

This is a story about what happens to a body when it spends a lifetime pretending to be someone else. And what happens when a pandemic leaves a calling card that never goes away.

The invoice nobody warned me about

I was diagnosed AuDHD—autistic and ADHD—at sixty-six years of age, still living in Australia. Sixty-six. That is not a late diagnosis. That is an archaeological discovery.

Five months later, I moved to Vietnam. Not because of the diagnosis—that was already in motion. But the timing matters. Because I arrived in a new country carrying two invisible loads. One I had just discovered. The other I had been carrying so long I had forgotten it was there.

Before that diagnosis, I had spent my entire life believing I was broken. Too intense, too emotional, too lazy, too much, too little. I collected labels like a passport collects stamps: depressed, bipolar, difficult, flaky, unmotivated, over-sensitive. Every label was an attempt by the system to explain why I did not fit. None of them considered the possibility that the system itself was the wrong shape.

And for sixty-six years, my body did what neurodivergent bodies do. It masked. It performed. It monitored every social interaction for threats. It adjusted my facial expressions, my tone, my posture, my breathing—thousands of micro-calculations per hour, every waking hour, every single day, for decades.

My autonomic nervous system never stood down. Not once.

The thing about tinnitus

And then there is long COVID.

I have a dear friend back in Australia who is still suffering from it. She knows what it is. She can name it, point to it, describe exactly how it ambushes her day. I admire that clarity because I do not have it.

Here is what I think happened to me: long COVID arrived, layered itself on top of decades of neurodivergent burnout, and quietly disappeared into the background noise.

You know how tinnitus works? At first, the ringing is unbearable. It dominates everything. You cannot think past it. And then, slowly, your brain learns to screen it out. Not because the ringing has stopped. Because your nervous system has simply… filed it under ‘normal’. You stop hearing it. Until something untoward happens—a quiet room, a moment of stillness—and suddenly there it is again, as loud as it ever was.

I wonder if that is where I am with long COVID. The chronic fatigue, the brain fog, the lack of balance, the exhaustion that sleep cannot touch—I have had these symptoms for so long that they have become my baseline. I do not notice them the way my friend does because they have merged with everything else my body was already carrying. Two rivers of exhaustion flowing into the same sea.

The problem with screening out a chronic condition is that you stop advocating for its treatment. You stop mentioning it to your doctor because it feels like just… you.

What masking actually costs

We talk about masking as though it is a social inconvenience. A bit tiring, like wearing uncomfortable shoes to a wedding. The research tells a different story.

Chronic masking activates the same stress pathways as sustained threat. Your hypothalamic-pituitary-adrenal axis—the system that governs your fight-or-flight response—stays switched on. Cortisol stays elevated. Muscles stay contracted. Blood flow to chronically tensed tissue reduces. Over months, those muscles begin to change. Over years, they harden. Over decades, they become what Mr Trung finds in my body: lumps of tissue where blood no longer flows properly.

This is not metaphor. This is physiology.

Now add long COVID to that picture. Post-viral autonomic dysfunction—where the virus leaves the nervous system misfiring long after the infection has cleared—produces many of the same symptoms. Fatigue. Cognitive fog. Exercise intolerance. That distinctive pattern of feeling almost normal for an hour, then crashing for the rest of the day.

Two conditions. Both invisible. Both dismissed by standard blood panels. Both attacking the same systems. And for a late-diagnosed neurodivergent person, almost impossible to tell apart on any given day. Am I crashing because my nervous system is finally unwinding decades of hypervigilance? Or because post-viral damage is throttling my energy? The answer matters, because one responds to gradual retraining and the other responds to rest. Pushing through one helps. Pushing through the other makes it catastrophically worse.

Van der Kolk wrote that the body keeps the score. He was right. But for late-diagnosed neurodivergent people living with long COVID, the body is keeping multiple scores in a language nobody taught us to read.

The cruel irony of safety

Here is the part nobody tells you about.

I moved to Vietnam. I found love. I had my diagnosis in hand. I stopped masking as much. For the first time in my life, my nervous system began receiving the signal that it might be safe.

And I collapsed.

Not because I was dying. Because I was finally allowing myself to feel what had always been there. The same thing happens to soldiers who come home from deployment. The body holds it together under fire. It falls apart in the quiet.

My exhaustion is not laziness. My pain is not hypochondria. My inability to get through a day without wanting to sleep is not weakness. It is sixty-six years of accumulated allostatic load—the cumulative physiological cost of chronic stress—compounded by a virus that rewired my autonomic nervous system, finally presenting its invoice.

And the invoice is enormous.

What your doctor might be missing

Standard blood panels do not capture this. Your GP checks your organs. They do not check your autonomic nervous system. They do not measure your cortisol rhythm across the day, or your inflammatory markers, or whether your thyroid is limping along just inside the ‘normal’ range. They do not test for the subtle autonomic dysfunction that long COVID leaves behind like furniture marks on a carpet after the furniture has been moved.

If you are a late-diagnosed neurodivergent person experiencing unexplained fatigue, widespread pain, muscle tenderness, or a pattern of brief energy followed by prolonged collapse—particularly if you have had COVID—your blood work might look fine while your body is screaming.

I wonder how many neurodivergent people over forty are being told they are ‘fine’ because the tests being run are not the right tests.

I wonder how many have long COVID symptoms so thoroughly merged with their existing burnout that they have stopped mentioning them.

I wonder how many are sitting with pain that has a name nobody has given it yet.

What to look for

I am not your doctor and this is not medical advice. But I am a psychologist who has lived in the body I am describing, and I wonder if any of these might be worth a conversation with your GP.

Persistent exhaustion that sleep does not fix. An hour of energy followed by hours of collapse. Pain that moves around your body or lives everywhere at once. Muscles that are tender to even light touch. Brain fog that comes and goes without pattern. Balance problems. A feeling of being fundamentally depleted at a level deeper than tiredness. The sense that your body has aged faster than it should have.

And this: the feeling that you have been tired for so long you have stopped noticing you are tired. Like tinnitus. The ringing is still there. You have just stopped hearing it.

If you have been masking for decades—whether you know it or not—and if COVID passed through your body at any point in the last five years, your body may be carrying the weight of both in ways no standard blood test will find.

The slow work of unpacking

Mr Trung comes twice a week. He makes me howl. He says it may be many months before the pain begins to ease. The tissue changes took decades to form. They will not undo in weeks.

I am also asking my doctor for the tests that standard panels miss. Cortisol patterns. Inflammatory markers. Extended thyroid function. The things that might explain the gap between ‘your blood work is fine’ and ‘I can barely stand up’.

I am learning—slowly, reluctantly—that healing does not look like going back to who I was before. It looks like becoming someone my body can finally trust. And it looks like acknowledging that my body is not carrying one thing. It is carrying everything. All at once. And it has been doing so quietly, for years, while I got on with the business of pretending to be fine.

A wondering, not a diagnosis

I do not know how many of you are reading this and recognising yourselves. I suspect it might be more than a few.

If so, I have no answers for you. Only a wondering.

What if the exhaustion is not a character flaw? What if the pain is not ageing? What if your body has been writing you letters for years, in a language you were never taught to read?

Might be worth learning the alphabet.

References

Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: Major findings, mechanisms and recommendations. Nature Reviews Microbiology, 21(3), 133–146.

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, W. (2017). Putting on my best normal: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534.

Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792.

McEwen, B. S. (1998). Stress, adaptation, and disease: Allostasis and allostatic load. Annals of the New York Academy of Sciences, 840(1), 33–44.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). ‘Having all of your internal resources exhausted beyond measure and being left with no clean-up crew’: Defining autistic burnout. Autism in Adulthood, 2(2), 132–143.

van der Kolk, B. A. (2014). The body keeps the score: Brain, mind, and body in the healing of trauma. Viking.