**DISCLAIMER: Before reading this post, I want you to know that someone does NOT have to EVER receive a feeding tube for their eating disorder to be labeled as ‘serious’. A feeding tube does NOT mean that a person’s eating disorder is ‘more serious’ than another person’s. Receiving a feeding tube in recovery is honestly just the decision of the doctors, nutritionists and therapists of an individual’s recovery team– and that decision is going to be different for each individuals team. Also, these experiences are personal to me, and may not be the case for everyone who receives a feeding tube.**
When I found out that I was going to be admitted to the hospital, my first fear was that I was going to have to get a feeding tube. Before we left our house, I made my parents promise me that I wouldn’t have to get one, but that was a promise that wasn’t theirs to make. Almost as soon as I was set up in my hospital bed, a nurse brought the dreaded tube and bag of ‘liquid yellow calories’ and I had a panic attack. Because of my panic attack, I had to be put to sleep in order for the nurse to place the tube. I woke up the next day and my ‘adventure’ with the feeding tube commenced.
The one word I would use to describe the feeding tube experience is discomfort. It’s physically uncomfortable, socially uncomfortable, and mentally uncomfortable. However, the thing about uncomfortable experiences is that it they are BEARABLE. It’s not enjoyable, but you can make it through with putting trust in the process. I’ll discuss some of the discomforts that I faced during my experience, with hopes that by sharing a few of my experiences I can not only help answer some questions and concerns of anyone who may one day need a feeding tube, but also help shed a better light on feeding tubes for everyone else so that they aren’t such a novel, intimidating thing.
One of the first questions I googled when I was preparing to leave to the hospital was “Does getting a feeding tube hurt?” Like I mentioned previously, I was not conscious when they placed my feeding tube, so I am unsure if the insertion process is painful. However, when I was getting the tube out the process felt as uncomfortable as getting my throat swabbed for strep. So I cannot imagine that if the initial placement of the tube is painful, it would be worse than the pain of receiving shots, getting blood taken, or getting a pap (sorry boys). As with any uncomfortable and painful medical procedure, the pain and discomfort ends, and you become a little bit stronger and more brave following.
Another physical discomfort that became more of a frustration than anything was the TAPE. The tape that I was given to hold the tube to my nose and face didn’t deserve to be called tape because it would lose its stick within five minutes. The tape was important to not only keep the tube from flopping around my face, but it also helped keep the tube in place so it wouldn’t pull when I ate food (another uncomfortable, not painful, experience). My mother set out to find the perfect tape for the job and we tested out just about every medical tape you could find in the first aide isle. We decided this kind of tape was the winner. It had the longest lasting adherence and was opaque which I liked better than having a big wad of pale toned tape that I had to keep pressing against my face.
The last of the physical discomforts that I want to discuss are some of the side effects of refeeding that I experienced, mainly bloating… and the worst gas of my entire life🙈 With just about anyone going through recovery from a restrictive eating disorder, bloating will happen. I really wish someone would’ve explained this to me because it’s absolutely terrifying. Your brain automatically thinks “IT’S HAPPENING. I’M GETTING SO BIG SO FAST.” But guess what? It’s not ‘pure fat’ that will last forever that is causing your body to look bigger- it’s your body holding onto nutrients and WATER after being in a starved state for so long. This article explains some of the processes of refeeding wonderfully. But the biggest take home point about bloating and water retention is- it will not last forever. As long as you keep eating, and keep getting more fuel through the feeding tube, your body will feel safe enough to relax and start digesting and distributing any weight gain evenly.
Like I said, I had the WORST gas of my life (just ask my family to retell the horror stories of me being able to clear out a room). I felt so extremely awkward and uncomfortable, and I kept thinking that what they were feeding me must be absolutely terrible for my body if it was making me produce THAT smell– but in reality, it was just because my digestive system had been so extremely slow, that it was trying to start kicking into gear, and part of that process produced a lot of gas. Though uncomfortable, it was just my body trying to get back to doing it’s job, and there is NO shame in that!
When you take a mental disorder and place a very specific physical attribute to it – like a feeding tube – people treat you like a delicate glass piece that could shatter with just the slightest touch. Friends talk to you with a nervous tone in their voice, family members try to awkwardly make jokes that come out wrong, strangers in passing give you looks that you interpret as pitiful, aaaaand pretty much every child will point at you and/or stare at you like you are a mysterious breed. You may start to feel like you are just a delicate glass piece that could break any second. But trust me, you’re not. YOU ARE STILL YOU.
If I could go back and change one thing about my recovery, it would be to not hide away like I did when I had my feeding tube. I could probably count on my hands the amount of times that I left my home when I had the feeding tube in because I was so concerned with what others would think of me. I was afraid people would judge me for ‘being that girl with an eating disorder’. But now that I am able to look back at this time of my life, I understand that there was absolutely nothing wrong with being the girl with an eating disorder. If someone were to judge me during that time, that says so much more about them than it did about me.
As mentioned before, placing a specific physical attribute to a mental disorder causes people to label you as ‘sick’… so when that physical attribute is taken away, many people will think that you are ‘all better’. I will never forget the week that I got my feeding tube out and went swimming with some friends that everyone thought that I no longer was battling my eating disorder. “I’m so glad that you are all better”, one guy said to me. “You ‘cheated’ to look that good in your swimsuit” another friend joked. For the rest of the night, and for a huge part of my recovery, those words haunted me. Getting the feeding tube taken out was just one of the very beginning stages of recovery, not the symbol of the completion of my journey. If anyone can take anything away from this blog post– This is it. The feeding tube is not the symbol of an eating disorder. Getting one placed does not represent the beginning, and getting it taken out definitely does NOT represent the end. So please, be considerate. The person with that yellow tube in their nose is a person just like you, simply going through a different journey.
The placement of a feeding tube is so anxiety provoking because you are being taken completely to the unknown. Your eating disorder voice is loud, screaming at you practically every second that this is not right. And it’s absolutely draining.
I may have a smile on my face in this picture, but my eyes tell a completely different story. I was afraid, overwhelmed, angry, and exhausted. I wanted nothing more than to go home, rip the feeding tube out, and go back to living the eating disorder engulfed life I was before. But that life would never lead to happiness, though I couldn’t see it in these moments.
The feeding tube may seem like a reason to restrict and not eat because you are being fed with each and every bag of formula they give you but please TRUST ME: the more you eat solid food from your meal plan, the faster the tube can be taken out (and that doesn’t mean to just eat until the tube is out and go back to restricting… or else they will have to put the tube RIGHT back in if this happens). The feeding tube is there to help make these beginning stages of recovery easier. Though it definitely seems like it is harder, think about how hard it would be to have to eat double, triple, or more of the amount of food you are used to eating. The feeding tube allows you to begin to practice eating more, but it is there to pick up any slack so that your health doesn’t continue to deteriorate. The feeding tube is your friend, not your foe, and the sooner you start to view it as that, the easier the process will become.
The feeding tube process is not an enjoyable one to say in the least, but it is an experience that I am grateful for. My experiences helped to teach me that though I may be faced with challenges that push me completely out of my comfort zone in almost every area of my life, I am strong enough to work through those discomforts. I hope that if you are someone who has to go through the same experience, you can learn some of the same lessons. And if you are someone who never has to undergo these experiences, I hope you can look at others who do go through this experience with more open and understanding eyes.