Looking Back: 30 Years of Shame and Finally Understanding My Experience

I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.

Doctors kept telling me it was all in my head.

They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.

Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.

Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.

So I started doubting myself.

I felt weak.
I felt crazy.
I carried a lot of shame for something I couldn’t control.

The fatigue and exhaustion that comes with this illness is crushing.

It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.

My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:

The problem isn’t simply how much I sleep.

It’s that my dysautonomia prevents the sleep from being restorative.

In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.

Only recently have I finally understood what’s really happening.

What I have is dysautonomia.

My autonomic nervous system doesn’t regulate properly anymore.

That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.

ME/CFS always felt like an incomplete label to me.

Yes, I crash after exertion.
Yes, sleep doesn’t fix it.
Yes, my body has never functioned the way people expect it to.

But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.

The only thing that actually helps is pacing — staying within my energy envelope.

I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.

After 30 years, I’ve finally stopped blaming myself.

That alone has been healing.

I’m sharing this journal entry in case it gives someone else a little more language for their own experience.

And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.

Our energy is extremely limited.

We have to be very careful to avoid crashes.

Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.

Sometimes understanding does not cure the body.

But it can begin to release the shame.

And after so many years of being misunderstood, that matters.

A year-long aerobic exercise program lowers long-term exposure to the stress hormone cortisol, as measured in hair samples, indicating reduced chronic stress. In a randomized trial with 130 healthy adults, those who completed 150 minutes of moderate to vigorous exercise weekly for a year showed lower accumulated hair cortisol than a non-exercising control group. Other health markers such as cholesterol, blood sugar, and inflammatory measures did not show meaningful changes in this healthy sample.

This work is of interest to psychology because it links sustained physical activity to long-term regulation of biological stress systems, highlighting how lifestyle factors can influence neuroendocrine and autonomic processes involved in emotion and stress processing.

Article Title: How a year of regular exercise alters the biology of stress

Link to PsyPost Article: https://www.psypost dot org/how-a-year-of-regular-exercise-alters-the-biology-of-stress/

Article Title: How a year of regular exercise alters the biology of stress
Link to PsyPost Article: https://www.psypost dot org/how-a-year-of-regular-exercise-alters-the-biology-of-stress/

Copy and paste broken link above into your browser and replace "dot" with "." for link to work. We have to do it this way to avoid displaying copyrighted images.

#ExerciseAndStress #HairCortisol #StressBiology #AutonomicNervousSystem #Neuroendocrine

Section 1. Case and Post-Mortem Analysis

Case

An IT professional under sustained high cognitive load and constant deadlines.

Regimen:

Sleep: 2–3 hours per day

Days off: up to 4 per month

Work sessions: long, no breaks

Caffeine: regular use

Symptoms:

Episodes of loss of consciousness

“Wobbly legs”, presyncope

Panic attacks

Declining memory and concentration

Visual strain/deterioration

---

Analysis (by systems)

1. Nervous system (CNS + autonomic)

Chronic sleep deprivation → regulatory overload.

Disrupted sympathetic/parasympathetic balance

Persistent “stress/survival” mode

Adrenaline spikes without physical trigger → panic episodes

Outcome: → panic disorder
→ cognitive deficits

#sleepDeprivation #autonomicNervousSystem #stressResponse #panicAttacks #cognitiveDecline

---

2. Cardiovascular system

Sleep loss + stimulants → unstable heart rate and blood pressure.

Rapid BP fluctuations

Possible rhythm disturbances

Outcome: → syncope
→ risk of cardiac arrhythmia

#cardiovascular #syncope #arrhythmia #bloodPressure #heartRate

---

3. Metabolic layer

“No recovery” mode = systemic dysregulation.

Glucose instability

Fatigue, weakness, “wobbly” feeling

#metabolism #fatigue #energyCrash #glucose

---

4. Vision (as a trigger, not root cause)

Continuous focal strain

Dry eye syndrome

Outcome: → Computer Vision Syndrome

#vision #digitalEyeStrain #screenTime #eyeFatigue

---

Causal chain

Sleep deprivation (core)
↓
Autonomic dysregulation
↓
Stress/panic + BP instability
↓
Presyncope
↓
Loss of consciousness

#rootCause #systemFailure #causeEffect

---

Misinterpretation

Hypothesis: “It’s caused by vision.”
Fact: vision increases load on an already failing system; it’s not the root.

#diagnostics #misattribution #rootCauseAnalysis

---

Critical risks (if unchanged)

More frequent syncope

Consolidation of anxiety disorder

Persistent cognitive decline

Increased cardiac risk

#riskAssessment #healthFailure #burnout

---

Conclusion

This is not a local issue (eyes/stress). It’s a systemic decompensation driven by chronic sleep deprivation.
Symptoms are no longer early-stage; they are borderline.

#conclusion #sleepCrisis #systemBreakdown

Symptom: Neurogenic Inflammation and POTS Blood Pooling

https://www.illmarks.com/symptom-neurogenic-inflammation-and-pots-blood-pooling/

#art #autonomicDysfunction #AutonomicFailure #autonomicNervousSystem #bloodpooling #BloodPressure #bodyHorror #bodyMapping #bodyart #bodyhorror #cardiology #chronicIllness #dinet #dystautonomia #hypotension #longCovid #medart #medicalArt #medicalart #MillionsMissing #neurogenicInflammation #neurogenicInflammation #neurology #orthostaticHypotension #orthostaticIntolerance #posturalOrthostaticTachycardiaSyndrome #POTS #potsie #pwLC #pwme #SciArt #SciComms #SymptomMap #SymptomArt #SymptomMap #tinitus #tinnitus

Acetylcholine receptors include nicotinic and muscarinic types controlling muscle and autonomic functions. #AcetylcholineReceptors #Nicotinic #Muscarinic #Cholinergic #Neuropharmacology #Pharmacology #AutonomicNervousSystem #USMLE #MedicalEducation

https://mymedschool.org/portfolio/u01-05-012-acetylcholine-receptors/?utm_source=mastodon&utm_medium=jetpack_social