Thinking outside the box
My name is Steven Pearson-Brown, I am 39 years old and live just outside of Newcastle in the north-east of England. I have been married to my husband Ian, coming up for three years in September, and I am an occupational health advisor and PhD student.
I’ve been on enteral nutrition on and off since I was 15 years old, but this became a permanent feature of my life in 2005. My reason for being on enteral nutrition is somewhat unusual - I was diagnosed with Anorexia Nervosa when I was 15 and tube feeding was the only way to keep me alive. Permanent tube feeding is not a regular treatment for an eating disorder, but after several long admissions to hospitals over 15 years, it was decided that permanent tube feeding would allow me to reach and maintain my physical health, and thankfully it has.
People find it a little difficult to understand sometimes, physically I can eat, but mentally that is a whole different story; the battle with food is one that I cannot win, and believe me I have tried! It would be nice to be able to partake in the social elements of food and to really engage with them, like those around me, but I accept that it is not how it is going be. At first, I would avoid all events that involved food, but this was mainly because I thought others may feel uncomfortable, but my resolve did not last long as I would feel left out of conversations; I am too nosy to let that happen! Now, I am as much a part of the events as anyone else, I just do not eat the food. Over the years, I have shifted my understanding so that I see my reason for being there as connecting with my family and friends, so I do not feel like I am missing out.
I find that when people first learn that I am tube fed, they will either ask me questions about it, or try not to react at all, at least at first - then the questions come eventually and I am happy to answer them, after all, I would rather they asked me than make assumptions.
I feel that everyone who starts enteral nutrition should know that, unlike Tigger, they are not the only one. I felt very alone at the beginning of my treatment, but PINNT showed me that I was not. I saw others travelling their own journey - same treatment but vastly different path and I realised that my venture was just beginning. I knew that there would be many turns along the way. So, remember you are not alone and most importantly be patient with yourself.
To the healthcare professionals, for whom I have the utmost respect and gratitude, please think outside the box sometimes. My team did, they believed in me and tried something different and because of that decision I am alive today and even better am healthy enough to really live it.
Many people ask me if people have/do support me and the answer is countless people do. My family fought hard for me since day one; they, like my healthcare team did not give up on me, even when I did and when it probably seemed hopeless. PINNT, for showing me that I am not alone; Carolyn (from PINNT) who taught me so much and built me up to be able to do what I do every day; my husband Ian, who stands by me every day, no matter what mood I am in, or how many times the alarm on the feeding pump goes off during the night, or how an overnight stay is like packing for a two-week holiday. We do not get through things on our own, it takes a village and I am so grateful for mine.