Surviving severe me/cfs

The five stages of grief are for able-bodied people.

I went through all five.
I accepted my illness.
But grief remains.

It’s no longer overpowering, but it’s always there — in the background, all the time. It never leaves.
Every day is a testament to everything I’ve lost.

The social contract is broken.
I am no longer part of life.

The last time I was outside was in September.
The last time I had a visitor was two months ago.

The loneliness of a broken body is existential.
It isn’t something that can be fixed.
I live in a body in constant agony: excruciating fatigue, pain, brain fog.
Everything is too much.
Walking to the bathroom is too much.
Talking is too much.

And the narrow field of what I can still do keeps shrinking.
Every year, I lose more.

Humans are not supposed to live like this.
Yet I am still alive.

And I am grieving.
All the time.

There is something about long-term illness that most people don’t understand.

People know how to respond to a crisis.
They know how to show up when someone gets sick — as long as that sickness has an ending.
You get better or you die.

But when you become severely ill and you don’t get better… and you don’t die… people don’t know what to do with you anymore.

After seven years of being this sick, I have three friends left.

I had many friends before.
People who told me they loved me.
People who told me how much I meant to them.
People who called me their best friend.

They’re gone now — except for those three.
I still believe that you need to be a good friend in order to have good friends.
And I have good friends: three of them.

And they offer the hardest part of being a friend: staying and meeting me where I am.

Sitting with me when I can’t talk.
Talking to me when I make no sense.
Quietly accepting the fact that I may give up one day — but rooting for me not to.

I have three friends.
I have a husband (for better or for worse).
I have a grown daughter.

That is so much more than many people in my situation have.

Some people have no one.

Why can’t we work?

🔷💠 "Why aren't you able to work?" - a common question often asked💠🔷

Describing the impossibility of employment while living with Myalgic Encephalomyelitis (ME) is like trying to explain the weight of gravity to someone floating in space. ME is a complex neurological, fluctuating and disabling disease that strips patients of the basic building blocks of daily function—let alone the capacity for work.

We are not lazy. We are not unmotivated. We are not “wasting potential.” Most of us were hardworking, driven and passionate about our careers—until ME took our ability to participate in life as we knew it.

🔷 The Disability Reality 🔷
Only about 25% of ME patients are able to work—and many of those can only manage limited, flexible work. At the other end, 25% of people with ME are housebound or completely bedridden. Even those with “mild” ME—often invisible to others—have lost at least 50% of their pre-illness functionality.

These numbers don’t represent a lack of trying. They reflect the physical, neurological and immunological collapse that defines ME.

🔷 Post-Exertional Malaise (PEM): The Wall We Can’t Push Through 🔷
PEM is the hallmark symptom of ME. It’s a delayed and disproportionate worsening of symptoms following even minimal physical, mental or emotional exertion. The crash usually comes 12 to 72 hours later and can last for days, weeks, months or longer. For many, the decline can be permanent.

A 2019 international survey by Holtzman et al. (n=1,534) found that 67% of people with ME reported never recovering from a crash caused by PEM.

This is not just tiredness. It’s post-exertional physiological injury. In ME, pushing through doesn't make you stronger—it risks permanent harm. Even minimal overexertion can trigger a level of collapse some never recover from. It’s why exercise is not just unhelpful but dangerous for us.

🔷 Fluctuating Illness 🔷
ME is a disease of instability. You might see us online one day or hear our voice in a short conversation—but not see the collapse that follows. ME doesn’t run on a schedule. Our capacity to function can change dramatically from hour to hour and day to day.

This fluctuation makes it impossible to meet deadlines, maintain fixed schedules or commit to the consistency required for employment.

🔷 Cognitive Dysfunction 🔷
“Brain fog” sounds gentle—ME cognitive dysfunction is not. It’s memory failure, language loss, confusion, sensory overload and an inability to process basic information. Reading, speaking, typing and even thinking become physically exhausting. This is not surprising, as your brain uses 20% of your body's energy.

Workplaces depend on sustained attention, memory and executive function. These are precisely the areas ME can impair most.

🔷 Energy Production Failure 🔷
ME is not a condition of low motivation or simple fatigue—it’s a dysfunction in cellular energy metabolism. Our bodies cannot produce or sustain energy normally, and rest doesn’t replenish it. No sleep, vacation or energy drink will undo what this illness does at the cellular level.

🔷 Physical Limits 🔷
Even basic physical tasks like sitting upright, getting dressed or speaking can exceed our energy envelope. Some of us need to lie down most of the day. Others collapse after simple movements. The physical exertion of daily life alone is already overwhelming—working on top of that is physiologically impossible for many.

🔷 Light Sensitivity 🔷
Many of us can’t tolerate typical workplace lighting. Fluorescent bulbs, sunlight and screen glare can cause migraines, vertigo, visual disturbance or neurological crashes. Some live in darkened rooms permanently.

🔷 Noise Sensitivity 🔷
Normal sound levels can be unbearable. Our nervous systems can’t filter noise like healthy ones can. A ringing phone, conversation or keyboard clatter can feel like an assault—leading to overstimulation, pain, confusion or even seizures.

🔷 Chemical Sensitivities 🔷
Many ME patients have Multiple Chemical Sensitivities (MCS) or Mast Cell Activation Syndrome (MCAS). Scents, cleaning chemicals, laundry products and colognes—everyday in most workspaces—can cause immune reactions, neurological symptoms or even anaphylaxis.

🔷 Immunocompromised Status 🔷
A mild virus for a coworker can be a months-long crash or permanent relapse for some of us. Many people with ME do not have robust immune systems. Shared office spaces, public transport and even remote jobs that require appointments or outings pose a major health risk for some of us.

🔷 Accessibility 🔷
Even without wheelchairs, ME patients may need full recline, silence, minimal light, temperature control and no chemical exposure to function. These aren't preferences—they're survival requirements. Most workplaces aren’t designed to meet these needs.

🔷 The Emotional and Social Weight 🔷
We live with an invisible illness in a world that demands visible proof. If we appear “well” for a moment, it’s assumed we’re fine. If we look ill, it’s assumed we’re not trying hard enough.

We’re judged for not working and also judged for trying to do anything at all. The emotional toll of constantly justifying your illness to society, friends and the system is devastating.

🔷 We Are Not “Just Tired” 🔷
ME is not burnout. It is not depression. It is not laziness. It is a multi-system neurological disease that profoundly disables us.

Some of us write, create or advocate when able—not because we’re well enough to work, but because these brief, careful expressions are a lifeline. They do not reflect our baseline or our capacity to sustain employment.

Sometimes, survival means stepping away from everything you love just to make it to the next day.

🔷 To Employers, Friends and Society 🔷
If someone with ME says they can’t work, believe them. We are not giving up. We are protecting what little function we have left. Even when we look okay, what you don’t see is the days or weeks of suffering that follow minimal exertion.

💠 We’re not lazy
💠 We’re not “burned out”
💠 We’re physiologically ill
💠 We’re doing our best to survive

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It’s been about 6 months since I made anything. I’ve been incredibly ill, just one issue after another.
This bag I made last summer, but I never got to use it.
This summer is passing by fast, and I haven’t spent any time outside yet. Feels like the walls are closing in on me.
I put the bag on the mannequin, and I’m looking at it from my bed. Somehow, it makes me feel better.