Phagophobia- the fear of swallowing

I had just visited my week old baby at the hospital. She had been brought home 5 days earlier but developed  a high temperature, hence her return to the hospital. I hadn't eaten all day as I stayed with my wife and the baby...I finally got home, having been 'thrown out' by hospital  night shift staff at the end of visiting hours.

I got into my flat, famished and feeble, frantically prepared a heavy meal to make up for the breakfast and lunch I never had, ate and went to bed. Then it happened. That dream.

I had a dream that I was walking down a dark tunnel towards a blinding light when suddenly, I heard my wife and newborn daughter calling me, beckoning me to come back. I suddenly awoke to find out that I was choking on regurgitated food, the chilli burning the top of my throat. I could hardly breathe. I tried to inhale but all I did was to wheeze and cough until my airway was clear, and after the initial terror, I gave no thought to it.

A few days later, as we were having a family meal, I realised that I was struggling to swallow my food. I will try to swallow, then hesitate. 

Eating was terrifying experience for me. It was like trying to jump off a cliff. You'd bend your knees, see the depth, run out of courage and then fail to jump. It was as though my brain had told my body to swallow and my body said "no", a split second after the swallowing process had begun.

Sometimes, I actually choked because part of the swallowing mechanism failed to do its job. I would push the food down my tongue into my throat, expecting my wind pipe to close automatically, bridged by the oesophagus, which would in turn receive the food. Wrong. The food would touch the wind pipe and a flood of adrenalin would engulf me; my heartbeat thumping like an upbeat bass drum in my chest as I would be electrified by a panic attack, which I felt as a cold or heat wave (not sure which) in my scalp and tongue.

Unfortunately, this was not the first time in my life I had experienced this fear of swallowing. When between the ages of 9 and 10, I suffered this same episode. I was so terrified that I stopped eating and lost a lot of weight. I honestly believed I would die choking on some food. A devout Catholic at the time, I would often be seen making a sign of the cross before attempting to swallow any thing, convinced that I was living my last moments on earth. I would also cover my ears in case someone spoke or said something funny to make me laugh midway through my swallowing.

The family doctor could not understand my predicament and, thinking that I had simply lost my appetite, prescribed a sweet- tasting hunger inducing multivitamin syrup which was to be sprayed three times a day down my throat. My sweet tooth accounted for my religious adherence to the medicinal course. However, only time healed me from this strange symptom.

Now, I was 32 and the condition had suddenly come back. I needed a lot of water... One litre per meal. Without the water I would forego my food and chose hunger over risk. I once went to an 'all you can eat' Chinese buffet, having forgotten that I had swallowing problems. I put the first spoonful in my mouth and chewed, chewed and chewed some more. I couldn't swallow it. It was stuck in my mouth. All eyes were on me. I was hungry but I couldn't eat. I hadn't bought water. I would have spent a lot on water if I had to eat. I wish I had bought a take away pack instead.  Whenever I tried to swallow, my hands would fly to my ears to shut them... An action carried over from my childhood, out of context but had become an automatic reflex after 22 years of dormancy. After several trips to the bathroom to drink from the tap( which I wouldn't normally have done, ) I ended up eating half of the meal on my plate, then walking away.

It got a lot worse until I lost some more weight. My attempts to swallow was an ugly sight to watch, and an ugly sound to hear. My cheeks would puff in and out as the food made its way unsuccessfully to and fro the front and back of my mouth whilst I made exaggerated hand movements. You could hear the squelching sound of food mixed with water being churned in my buccal cavity. Initially, I could swallow my food by drinking any liquid. Then it got worse. I could only drink water and nothing else...

Later I realised that the less I focussed on swallowing, the better I could eat. But anytime I was reminded of my swallowing issue, it all came back again.

Statements like 'you don't like my cooking' or ' has your swallowing issue reappeared?' would trigger a comeback of the problem. Also, whenever I was placed in a social situation, like eating at a table in public, where I was supposed to be making conversation or answering questions, I would find it impossible to swallow the food I had inside my mouth. I would sometimes have to get rid of the masticated food.

Fortunately,  I did something I couldn't do when it happened to me as a child in the 80s: I went online and researched forum after forum until I finally had a name for the condition and found hundreds of people who exhibited the symptoms I had. It was called ' phagophobia- the fear of swallowing or (in rare cases the fear of being swallowed.)

I went to see my GP who thought there was a swelling in my throat. But I explained to him that there was no obstruction and no pain. Just intense paralysing fear. I explained to him that it was a bit like stammering/ stuttering. The sufferer would make several half- baked unsuccessful attempts to say a word then finally, after the umpteenth attempt, they would finally manage to say the word. The success of this exercise wouldn't have a pattern, it is a bit like playing Russian Roulette with your voice. You don't know when you will get it right or how many times you would try , and fail. This was exactly what I was facing. However, it was not with speech in my case. It was with swallowing my food. The only impediments to the food going down were my mind and my panic attacks.

" You need Cognitive Behavioural Therapy, "said the Doctor. "That is not available on the NHS." That ended my search for a medical intervention and I relied on self-help strategies to overcome the problem. It is not an anatomical problem. There is no pain involved however, the fear is intense. It is an extreme anxiety problem, a phobia. I still have it but it very rarely occurs these days. I think it's gone...I can't remember the last time I experienced it. This phenomenon usually follows a choking incident, either witnessed or experienced by the sufferer.

Here are a few tips that have helped me:

- Move away from any source of anxiety during meal times ( I moved away from interrogations, plans, discussions, bills and bank balances, disturbing news on TV ). These have been found to tighten my throat.

- Provide plenty of water( even if it won't be drunk) this provides reassurance for the sufferer.

-Give them some privacy-( Being watched put me under enormous pressure and I would stress eat..stuffing my self with food, only to realise that the pressure is preventing me from swallowing. Then comes the trip to the toilet, where I would have to discard the food.) I found that eating in a room all by myself relaxed me a whole lot more.

-Monitor them: having someone to act as a backup is an immense relief. Be ready to intervene when you feel they are choking or turning blue. Learn and practice the Heimlich  manoeuvre...just in case.

- Don't force them to eat all their food. A little bit of food eaten is a huge milestone. Pushing it further would trigger further anxiety- vicious circle.

-Provide an indirect distraction to enable them take the focus away from the swallowing process.(TV) but do not engage them in a conversation.

-Allow then to stim, speak to themselves, cover their eyes, mouth or ears as they give it their all to swallow their food.

-Celebrate their victories- never underestimate the huge effort they put into swallowing that spoonful we all take for granted. Reward them with ice cream,milk shake, custard, jelly or a drink. 

-Avoid denial but be reassuring.- they have the irrational conviction that they will choke to death if they try to swallow their food and the swallowing mechanism doesn't complete itself. Don't let them feel that you don't understand them. They will feel even more vulnerable.  Don't tell them that it won't happen because it would have probably happened before and they would lose trust in you. Instead, adopt a "together we will conquer that fear" approach.