When I was about the age of 11, I stood in the kitchen of the house I was growing up in and eating a piece of cake that had been sitting in a box on top of the shelf for a while. As I was chewing on this piece of cake, I began to realise the cake was extremely dry. I attempted to swallow the cake and as I was swallowing, I could feel that it wasn't going down. I repeatedly tried to swallow to get it down into my stomach but didn't realise this was actually pushing the cake further down. I wasn't phased at all until I turned around and heard my step dad say to my mum "She's choking!". It was at this point I started to panic and realised my life could potentially be in danger.
My mum didn't hesitate for a second. She slammed on my back until the food finally shot across the room. I began to cough and could breathe at last. For the next few days, my throat felt extremely sore, as if I had swallowed a blade, and I avoided eating due to trauma of what had just happened. After a few days, I gradually built up my confidence to eat but felt extremely anxious when doing so. It's ever since that day that I have struggled when swallowing food.
During every meal, my heart would race, my body would be sweating and my breathing became fast; and each time I came to swallow, the fear would kick in and it would feel as though I was choking all over again.
I didn't know this at the time, but there is a technical explanation for what was happening each time I tried to swallow my food and why it felt as though I was going to choke.
Since working as a Dysphagia Training Assistant, I have learnt a lot about the anatomy of the human swallow and what can go wrong. During the oral phase of swallowing (when food is in the mouth), when you are ready to swallow your food, your tongue pushes against the roof of your mouth, creating sufficient pressure to push the food towards the back of the throat ready to be swallowed.
I am now able to understand why I feel as if I am going to choke each time I swallow: I go through the usual process of pushing my tongue against the roof of my mouth in preparation to swallow but it seems that the fear and anxiety kicks in at this exact moment. My body goes into freeze mode as a defence mechanism from my traumatic choking incident in order to protect me from choking again, but ironically this puts me in more danger because the food is sat at the back of my throat waiting to be swallowed and if I don't swallow the food in time, I could incidentally choke. It is like my swallow is delayed when triggering the swallow by a few seconds which can be terrifying because I feel so out of control when this happens.
Saliva also plays a huge role during the swallowing process with helping to break down food and enabling an easy swallow. Having a dry mouth can make this process a lot more difficult. One of the most common symptoms of anxiety is having a dry mouth, so as I'm sure you can imagine, being anxious when eating can make things quite tricky due to a lack of moisture. This lack of saliva when eating is another contributing factor to my difficulty with swallowing.
The months following my choking incident were very difficult. The incident was so fresh and I was still trying to recover from the life threatening event, so pretty much every mouthful was a challenge. As time went on, it didn't get easier but I came to an acceptance that eating would always be difficult, that I was scared of eating. This is quite a huge burden for someone to carry, especially an 11 year old girl. And for some strange reason, I didn't tell anyone. I had somehow convinced myself that this was normal, that this was just a consequence of choking and it was just something I had to live with. The thought never occurred to me that this was a problem that needed to be spoken about, and to be honest, I was embarrassed. Swallowing is a normal bodily function and I thought I would sound crazy if I told people I couldn't swallow properly anymore. So I left it. I suffered in silence. I lived with this problem, somehow believing that it was normal. But it wasn't. It's not.
It wasn't until 2019 that I realised this was a serious problem. I went away on holiday to Scotland for 4 days on my own which was a 9 hour train journey away from home. So this was a very nerve racking experience for me. The first night I spent there, I decided to eat at the hotel restaurant. I ordered a pizza and from the first bite to the last, I struggled more than I ever had before. Each mouthful was a mountain I had to climb and I was getting more tired, more breathless the more I tried to force myself to eat.
Each day I spent in Scotland, the fear and anxiety noticeably increased. By the end of my time away, I had stopped eating altogether because it simply became too difficult to eat anything. A few days after I had returned home, I decided to release this burden from my shoulders and told my family what was going on. I went to my GP and discussed this problem I had been having for years and how it had suddenly got to the point where I had stopped eating at all and was told "I don't know how to help you". I was referred to talk to Steps to Wellbeing, a free NHS service to receive counselling, which can take months to get an appointment. I left the doctors feeling helpless and quite terrified. What was wrong with me? I had lost 2 stone (placing me at 7 and a half stone) within the space of a month and had to be signed off work as I kept collapsing due to weakness.
This then lead to my partner at the time breaking up with me because my condition was too hard for him to cope with. So this left me homeless, jobless and severely depressed. I felt I had lost everything. I had been rushed to hospital on several occasions due to my weight but was always told the same thing: "You just need to try harder". Whenever I tried to talk about it, I received really useless responses. "Why can't you just do it? It's not hard, I don't understand why you're making a big deal out of such an easy thing". I felt embarrassed and I was getting very self conscious as more people were pointing out my weight. I was getting so tired of it all. So much had happened in such a small amount of time and and my mental health reached a point where I just didn't think I could go on. I ended up having to stay in a mental health hospital for a short time and I had never felt more alone.
After 8 years of not knowing what was wrong with me, I then received a diagnosis from Steps to Wellbeing: food phobia; and panic disorder. At the time, this sounded like a reasonable explanation, however it wasn't until later down the line, when I came across a support group for people that were experiencing the same thing as me, that I came to the realisation that I have pseudo-dysphagia. I know it is not good to self-diagnose, but I have never been so sure of something before. Everything I had been told about pseudo-dysphagia was exactly what I was experiencing, it all made sense. Pseudo-dysphagia is fear of choking and this phobia is very often a result of a choking incident. So although I have never received an official diagnosis from a health professional (most likely because it is not common knowledge amongst healthcare professionals unfortunately), it is clear that this is what I have been struggling with.
Things were difficult for a while after being released from the mental health hospital, but with time, there was improvement. I had started gaining weight by drinking milkshakes and consuming liquidised foods. I had seen a hypnotherapist which helped me to start eating some solids again and when I discovered that anxiety played a big part in my swallowing, I started taking anti-anxiety medication and began therapy to work through the underlying issues that were causing anxiety. This all made a big difference with my swallowing, but the biggest factor of my improvement was my partner Ben who was encouraging and understanding of my disorder and was very supportive. It was amazing how much of a difference it made having someone to finally support me through it.
5 years later and I have come a long way. I know what foods I find easiest to swallow and try to avoid foods that I know will cause more anxiety. I still struggle day to day but I am a healthy weight and have a better understanding of this condition and why I am the way I am which sometimes is the best form of validation.