Content Note: This post mentions eating disorders, tube feeding, and medical dismissal. No numbers, no tips.

Disclaimer: This is my personal experience, not medical advice. Bodies are all different; I’m talking about mine.

The ‘Never’

I used to say I would rather die than have a feeding tube.

When I was 16 and deep in anorexia, a feeding tube meant failure. Force. Losing the last bit of control I thought I had. I wrote it into my advance care directive: no feeding tubes, ever. If my body gave out, then it was my time to go—and you’d better let me go.

I’m 27 now. I’m fully recovered from anorexia. And I’m rewriting that “never,” because I finally believe my life is worth supporting—even if support looks like a tube.

How I Got Here

I’m neurodivergent (diagnosed AuDHD) and I’ve experienced ARFID for as long as I can remember. I also started restricting intentionally very young, partly because I didn’t have reliable hunger cues—and because restriction became a tool my brain learned to reach for.

I recovered from anorexia in June 2024. Recovery didn’t erase my medical reality. It just made it impossible to keep blaming myself for it.

For a long time I treated dumping syndrome as my “least problematic condition,” because I was attributing so many symptoms to endometriosis and my connective tissue disorder. But over time a pattern became impossible to ignore: eating—even small amounts—could trigger a racing heart, dizziness, sweating, GI distress, and a crushing crash afterward. The fatigue is the part that steals the most. It’s not just discomfort; it’s losing hours (or days) of function.

At a certain point, my brain learns the obvious lesson: food = consequences. That is a brutal thing to live inside of—especially when you’re trying to recover from an eating disorder and your body is also saying “no” in its own way.

Part of me still whispers, I’m not sick enough. But I’m done gaslighting myself. I don’t need to have dramatic lab results to deserve support. On paper, things can look “fine.” In my actual body, basic tasks cost an absurd amount. A shower is an event that requires recovery. I rely on SAID because I can’t work. I’ve been surviving on too little for too long, and it shows up most clearly in my capacity to live.

The Present: Undernutrition that Won’t Budge

When I struggled with anorexia, I feared food because I feared weight gain. Undernutrition felt like achievement. “Sick enough” felt like a finish line.

Now my fear is different. I don’t fear calories. I fear what eating does to my body. And that’s a mind-bending place to live when you’ve recovered from an eating disorder.

When my stomach empties too fast, my small intestine gets hit with food before it’s ready. Symptoms follow—always immediately after. Over time, eating becomes something I brace for. And when people tell you, “It can’t be that bad,” you start minimizing your own reality just to make it socially acceptable.

For years I was told some version of: it must be psychiatric. I was even given a somatic symptom disorder label. That didn’t make my symptoms disappear—it made me doubt myself.

Later, receiving diagnoses like HSD/hEDS, endometriosis, early idiopathic dumping/rapid gastric emptying, and chronic gastritis/duodenitis didn’t magically fix anything either. But it gave me something I didn’t have before: proof (to myself) that my symptoms were physiologic, not imagined—and that they deserved care.

Why a Tube is on the Table

My reasons for requesting a tube aren’t because I failed at willpower, rather I’ve admitted my body requires more support than I ever wanted it to need. It’s not because I’m ‘giving up’ on oral nutrition, rather I wish for it to bridge the gap between what I can consume orally and what my body actually needs.

It’s not because I’m giving up on oral nutrition. It’s because I need a bridge between what I can eat and what I need. It’s not “going backwards” in ED recovery. My recovery didn’t cure my physiology. It just made me more aware of my body’s needs. Just like my Rollator is an assistive device for mobility, a feeding tube can be an assistive device for nutrition.

In the past, I’ve waited until crisis to support my body. Now, I’m realizing I shouldn’t have to be in crisis to deserve support. I’ve recognized I want to have a life worth living, and for me that might look different than somebody who recovered into a healthy body. I want to have the energy to play with my niece*. To enjoy my time with my boyfriend. To write. To just exist.

I know a tube won’t magically make life easier. I’ll still be chronically ill; I will be a well-nourished disabled/chronically ill person. And maybe it has to look different for me. Everything in my life has had to be adapted in some way for me to be able to enjoy it. It’s okay to need accommodations. It’s okay to need more support. I will continue advocating for myself, because my life depends on it. 

Complicated Reactions

After I accepted that I needed more support, I knew there would be hurdles to jump through, but not the ones that presented before me. I was told to try mirtazapine (an appetite stimulant and antidepressant that can help with sleep) and 2.24 boost- which won’t fix a dysfunctional stomach. I was also given a generic ‘tubes are invasive’ response, which felt dismissive when I already know tubes are invasive- and I’ve exhausted every other option. I was also told a tube is ‘extreme’, again, as if I don’t already know that.

My body is struggling and I felt like certain people weren’t hearing me. I was told ‘doctor knows best’ when they are also human and also have limitations. Doctors may know a certain body system well, or a specific condition- but they cannot say how it will affect every single person.

I am the expert on my own body, and I’m allowed to fight for this body. The thing is, it’s hard that other people think a tube is extreme, but the hardest part is that I used to think so, too.

This was made worse by having the ’somatic symptom disorder’ label. Being told ‘it’s psychiatric’ when I had severe pain (among other symptoms) taught me to minimize. I shrunk my experience down to what was ‘acceptable’. This really didn’t serve me well- but it made my symptoms palatable for everyone around me. It wasn’t until a compassionate human walked into my life, and taught me that minimizing wasn’t helpful for me. It would take a long time for that message to sink in. And now that it has, I swear I will continue this journey to stop minimizing. 

It Takes Work

Being recovered from anorexia took a lot of effort. And when I was deep in anorexia, I promised myself I’d never ever, under any circumstances, accept tube feeding. I had it written into my Advance Care Directive (ACD). And now, I’m adapting my ACD, and reminding myself that needing a feeding tube doesn’t mean I failed. In fact, it’s me choosing to continue the fight to live a meaningful (to me) life. Being recovered, for me, doesn’t mean ‘I will eat like a healthy person with a cooperative stomach’ anymore. Instead, being recovered means that ‘I will accept every tool I require in order to keep my body as safe and nourished as possible, even if that includes a feeding tube’. 

Key Takeaways

Remember, this is my experience, not medical advice. 

I am not saying every person with dumping syndrome and/or ARFID will require tube feeding as a part of their journey. 

What I want us to know is that we do not need to be on death’s door/have abnormal labs to deserve support/care. That needing medical devices (including mobility aids) does not make us failures. And that disabled and chronically ill individuals are allowed to know our bodies, and ask for support. 

If you take anything from this post, I hope it’s that you don’t need to be on the edge of dying to deserve real support. You do not need to be “healthy” to deserve nutrition. And finally, that needing a feeding tube does not mean you’ve erased the work you’ve done to recover.

Sending Love and Healing Energy,

Brianna

Definitions and Notes

*Niece- my cousin’s (who’s like a sister to me) daughter.

ACD Advance Care Directive

ARFID Avoidant/Restrictive Food Intake Disorder; a neurodivergence where certain foods are unsafe, overwhelming, or inaccessible. Food restriction is not because of body image disturbance or interest with losing weight.

AuDHD Autistic ADHDer

Dumping syndrome a syndrome that typically occurs after surgery, particularly those involving the stomach and/or oesophagus. It is caused by rapid emptying of ingested food into the small intestine from the stomach. 

• Early dumping symptoms appear within 30 minutes of eating, including: abdominal cramps, flushing, sweating, diarrhoea, and palpitations.
• Late dumping symptoms appear within 1-2 hours of eating, and relates to low glucose (hypoglycaemia). These symptoms include: feeling faint, weak, or nauseous, having a rapid heart rate, and might sweat and become pale. 

HSD hypermobility spectrum disorders

hEDS hypermobile Ehlers-Danlos Syndrome

Idiopathic a disease or condition of which the cause is unknown, or that arises spontaneously.

SAID Saskatchewan Assured Income for Disability

Helpful Links

An Unfiltered Recovery: Chronic Illness, Disability, and Grief

Dr. G’s Sick Enough 2

NeuroAffirmED (National Eating Disorder Information Centre- NEDIC)