What is it like to be permanently nil per os (nothing by mouth)?
I’ll tell you.
Being nil by mouth is horrible.
If you were someone who enjoyed food, cooked, shared meals and used meals as meaning and punctuation in life then being nil by mouth is an identity amputation.
Being nil by mouth isn’t just a medical status.
It’s the loss of:
- pleasure
- ritual
- choice
- social connection
- comfort
- identity
Food and drink are woven into being human. When they’re taken away indefinitely, the brain often interprets that as existential threat – “this feels like the end” – even when life is continuing.
I continue to live after being seriously unwell with a collapsed lung and multi-organ failure. I’m lucky to be here.
But I miss eating and drinking. It is a huge quality of life issue that I have to learn to live with.
I can’t eat and drink without a very real risk of developing aspiration pneumonia and that would almost certainly be the point of no return. This goes with the territory of being a head and neck cancer patient. Up to 70% of HNC patients develop aspiration pneumonia during their lifetime because of swallowing problems (oropharyngeal dysphagia) and the late-effects of radiotherapy treatment – as I have found out.
When swallowing becomes dangerous, a deeply primitive comfort channel is cut off. The brain doesn’t replace it easily.
Not eating and drinking eats away at you and consumes you.
This is why being nil by mouth can feel:
- infantile
- humiliating
- emotionally raw
- strangely exposed
- demotivating
- soul-destroying
The hardest part of not eating and drinking is the lack of agency. Choice is psychological oxygen.
If you don’t like a particular food then you can simply try another. But when you are tube fed through a Radiologically Inserted Gastronomy (RIG) tube like me then there is no choice – I get a single prescribed feed, through a tube, with no flexibility, no appetite cues, no reward loop. RIG feeding is messy and time-consuming too. Each 500ml feed takes a couple of hours or more so feeding and medication administration down the tube can take up 7+ hours.
Here’s the kicker: “tube enteral feeding itself is a risk factor for aspiration pneumonia” according to the British Thoracic Society Clinical Statement. The other thing is saliva: the BTS also note that “patients who are ‘nil by mouth’ still have to clear saliva (normal production is up to 1.5L/day), which itself remains an aspiration risk.”
The odds are stacked against me somewhat.
Believe me when I tell you that’s not just nourishment deprivation, it’s agency deprivation.
My breakfast, lunch and dinner are the same 500ml of liquid feed. No snacks, no drinks, no choice and choice collapse leads to learned helplessness.
In this situation hope starts to fatigue, grief deepens and anger surfaces. Why? This is a bereavement.
My body no longer responds as it used to, I have the knowledge that realistically speaking being nil by mouth is permanent and I have the constant background fear of aspiration pneumonia. That’s on top of the fear of losing my jaw to osteoradionecrosis and cancer itself.
This is taking some getting used to. I hate it because it is an abnormal, life-altering loss.
But hating this does not mean I want to die – far from it.
It means I want my life back or at least a version of life that feels recognisably mine.
This is not just psychological either. My nervous system is doing exactly what it evolved to do when survival routines are broken. This isn’t something I can easily mindset my way out of.
Food is not optional to the brain. Long before it’s pleasure or culture, food and drink are primary survival regulators. When you’re nil by mouth, the brain doesn’t interpret it as “a medical workaround exists”. It registers: “The normal route to survival has been shut down.”
Even with a RIG feed keeping me alive, my nervous system stays on low-grade alarm that produces:
- persistent anxiety
- irritability
- flat mood
- hopelessness
- intrusive thoughts
This isn’t depression by choice, it’s biology reacting to blocked survival pathways. I miss food and drink like mad.
One of the hardest things about being nil by mouth is that it is very difficult to maintain weight or put any on.
Since leaving Critical Care at the end of October 2025, I have lost nearly 3 stones in weight. This is demoralising and reinforces the feeling of wasting, of fragility, of being stuck. I’m all skin and bones these days and none of my clothes fit me.
If my nutrition isn’t managed where I am putting weight back on then I know then I am at risk because my body will start to break down my muscle tissue for energy resulting in muscle weakness, physical deconditioning, and increased rates of morbidity and mortality.
I’d say that muscle catabolism started to happen weeks ago.
One more thing to worry about: being nil by mouth means the muscles involved in oropharyngeal swallowing are more at risk. Periods of muscle disuse leads to muscle atrophy. Yes, that’s right, I’m at at high risk of decline in swallowing function.
Research shows that patients who are 100% dependent on enteral feeding for nutrition are less likely to return to full oral intake within a year when compared to those who continue to take some food and drink orally during the course of their treatment.
One thing I have always done is keep going but I am slowly learning to say “This is unbearable.”
I have realised that I don’t have to be inspirational about this, I don’t owe anyone stoicism today and I don’t have to be brave right now.
I find it hard to do admit these things but it does not cancel out my chronic courage, my undying love for wife and daughter, or my fierce will to live. I suppose what I am describing is not weakness, ingratitude, or lack of resilience but grief and it’s a very specific, very brutal kind.
This isn’t a character flaw. It’s a predictable response to chronic uncontrollability.
When eating and drinking are taken away, you lose a core human control system:
I’m hungry → I choose food → I’m satisfied
I’m thirsty → I drink → relief
That loop is gone. The reward system goes offline.
Eating and drinking trigger dopamine, serotonin, and opioid release. Not indulgently, regulatorily. They’re part of how we reset stress, mark the end of effort and feel relief. For me, these have just evaporated. Long-term nil by mouth removes one of the last remaining reliable rewards during illness.
So now my brain asks:
What do I look forward to now?
What breaks the day?
Now imagine that.
Could you cope with not eating and drinking ever again for the rest of your life?
In a situation like this the nervous system defaults to helplessness and despair.
But I can’t let that happen. Emotional shutdown isn’t an option.
I know it is a thought-terminating cliché, but ‘it is what it is’
I’m still here and I have to rebrand my ‘feeds’ as refuelling. My RIG is now my lifeline and I have to be very grateful for that.
I know I have to treat my body as injured, not failing. It is working under extreme constraints and I will treat it as such.
What this is NOT and let me be very clear: this is not “Look on the bright side” or “Make peace with it”
It’s a psychological splint, not a cure. Something to stop the mental bleeding while the situation remains brutal.
The one thing I really don’t like about not eating and drinking is that it mimics end-of-life symbolism: dying, hospice, final stages and withdrawal from the world.
Doctors, speech and language therapists and dieticians will focus on safety but my psyche hears finality.
This is why it can feel existentially terrifying even when I’m medically stable. I feel vulnerable and it can feel like I am disappearing.
I know that long-term nil by mouth is going to be psychologically traumatic, even when it’s life-preserving because my nervous system is under sustained, unnatural strain.
This matters clinically because medical staff who focus on nil by mouth being a technical safety decision won’t really focus on grief, trauma, the mental health risk and the erosion of hope. This deserves a different kind of care, not just nutritional management. No one will have the time for that.
So it’s time for me to take charge and be my own support system:
- Nil by mouth isn’t the end of the line for me.
- Nil by mouth equals nil desperandum (never despair)
- Nil by mouth equals nil volentibus arduum (nothing is impossible for those willing)
I am willing and I will not despair. Nothing is impossible.
My aim is to eat and drink again.
Don’t write me off.
This is not the end.
Nil mortalibus ardui est – nothing is impossible for humankind.