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.

𝗪𝗼𝗿𝗹𝗱 𝗜𝗻𝗳𝗹𝗮𝗺𝗺𝗮𝘁𝗼𝗿𝘆 𝗕𝗼𝘄𝗲𝗹 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆 - 𝟭𝟵 𝗠𝗮𝘆 𝟮𝟬𝟮𝟲

𝗧𝗵𝗶𝘀 𝘆𝗲𝗮𝗿’𝘀 𝘁𝗵𝗲𝗺𝗲:
"IBD Has No Borders: Access to Care"

Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis, affects millions globally with rising cases even in Asia. On this day, we raise awareness about the importance of equal access to diagnosis, treatment, and specialist care for all patients worldwide.

𝗪𝗵𝘆 𝗧𝗵𝗶𝘀 𝗠𝗮𝘁𝘁𝗲𝗿𝘀:
- IBD affects people of all ages, genders, and geographies.
- Early diagnosis and proper treatment improve quality of life.
- Diet, gut microbiota, and lifestyle play crucial roles in managing IBD.
- There is a growing need to reduce stigma and support patients, especially the elderly.

𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 & 𝗖𝗮𝗿𝗲 𝗧𝗶𝗽𝘀:
- Prefer a diet rich in complex carbs, fiber, fruits, and vegetables.
- Avoid high-fat, refined sugars, excessive animal protein, and food additives.
- Maintain a healthy gut microbiota with probiotics and prebiotics.
- Limit sweets, sugary drinks, and alcohol consumption.
- Consult healthcare professionals for personalized care and monitoring.

Let’s work together to remove barriers and ensure everyone living with IBD gets the care they deserve!

#WorldIBDDay2026 #IBDHasNoBorders #InflammatoryBowelDisease #CrohnsDisease #UlcerativeColitis #GutHealth #AccessToCare #IBDAwareness #HealthyGut #PACEHospitals #SCABPharmacy #ChronicIllnessSupport #IBDPrevention #GutMicrobiota

FND + mobility aids = empowerment. For many living with Functional Neurological Disorder, these tools aren’t defeats, they’re freedom. Use what helps you move through the world. 💙

#FND #FunctionalNeurologicalDisorder #MobilityAids #FNDAware #ChronicIllnessSupport

This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
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#CSL #Donate #DonatePlasma #PlasmaDonation
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#ChronicIllnessSupport #Healthcare
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𝗪𝗼𝗿𝗹𝗱 𝗜𝗿𝗿𝗶𝘁𝗮𝗯𝗹𝗲 𝗕𝗼𝘄𝗲𝗹 𝗦𝘆𝗻𝗱𝗿𝗼𝗺𝗲 𝗗𝗮𝘆 𝟭𝟵 𝗔𝗽𝗿𝗶𝗹 𝟮𝟬𝟮𝟲
𝗧𝗵𝗲𝗺𝗲: 𝗖𝗵𝗮𝗺𝗽𝗶𝗼𝗻𝘀 𝗥𝗮𝗶𝘀𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗔𝗯𝗼𝘂𝘁 𝗜𝗕𝗦

Irritable Bowel Syndrome (IBS) affects millions worldwide, causing abdominal discomfort, altered bowel habits, and impacting quality of life. This World IBS Day, let's unite to break the stigma and raise awareness.

𝗪𝗵𝘆 𝗶𝘀 𝘁𝗵𝗶𝘀 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁?
- IBS affects young adults, especially women and those with family history or mental health challenges.
- Early diagnosis can reduce pain, fatigue, and social difficulties.
- Greater awareness encourages timely medical help and better treatment access.

𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗧𝗶𝗽𝘀:
- Eat homemade meals with fresh ingredients.
- Avoid fatty, spicy, and processed foods.
- Track your diet and symptoms to identify triggers.
- Never skip or delay meals.
- Practice relaxation and regular exercise.
- Limit fresh fruit to 3 portions/day and tea/coffee to 3 cups/day.
- Avoid fast eating, alcohol, and fizzy drinks.

Together, we can support patients as champions of change!

#WorldIBSDay #IBSAwareness #IBSChampions #GutHealthMatters #DigestiveHealth #MentalHealthAndIBS #HealthyEating #IBSPrevention #BreakTheStigma #ChronicIllnessSupport #SCABPharmacy

Some days the emotional weight hurts more than the physical pain.
This space is for naming what actually hurt today.

#InvisiblePain #ChronicPainAwareness #MentalHealthMatters #SpoonieCommunity #ChronicIllnessSupport #NightThoughts #DisabledLife