In Powhatan County, Virginia, you’ll find Hannah Setzer. Probably doing deadlifts, running after her four teenagers or tending to her menagerie of animals and mini farm, quite possibly while tube-feeding. This memoirist, disability advocate and life coach muses on food, family and how she inadvertently influences the fitness space.

How did tube-feeding first come into your life?

I was born with a medical condition of cystic hygroma – it’s now called lymphatic malformation. This means there are cysts in my head and my neck, so pretty soon after I was born I had a tracheostomy and a gastrostomy (G) tube placed.

I can swallow little amounts of water but not any food. I’ve never eaten any other way. I have a gravity bag that’s hanging on a door jamb right now. I’m feeding as we talk.

So you’re a lifelong tubie and for most of your life you were on a commercial formula. How did you find your way to blending real food?

I was on PediaSure until I turned 18 and then I was put on Ensure – which is just PediaSure for adults – and was on that until I was about 24. At this time I had friends who were really into health and nature and hippy stuff. They’d been seeing a chiropractor and were like, “he’s holistic, he’s amazing!”

So I went to this chiropractor and he said “why are you on Ensure? I’m going to get you off it”. He’s a chiropractor – he’s not a dietitian, nutritionist, or anything like that. But he said, “okay, you’re going to get almond milk and protein powder, and that’s what you're going to live off”. And I was like, “okay, great!”

Almond milk and protein powder don’t have a lot of calories so I lost 20 pounds in like two weeks. I also felt terrible.

I bet you did. Eating just almond milk and protein powder is pretty nuts.

I really should have sued that chiropractor for malpractice. But the friends who recommended him to me said, “okay, we’ll figure this out”. We started mixing in bananas and applesauce and spinach – stuff that would blend up easily.

While this was going on my parents were super mad at me. I was like a skeleton, so they were not happy. But I kept thinking, we can figure it out. Just let me keep trying.

On the Ensure and the PediaSure I was sick pretty much all of the time. At least once a month the cysts in my face would get infected. I know now that this was because of all the sugar in those formulas. Cysts thrive on sugar. Even though I lost a lot of weight as I was trying out real food, I wasn’t sick. I could feel that there was something to this. Just let me keep trying!

Around that same time I sold everything I owned and I moved to South America, to Brazil. And in Brazil they eat a lot of beans and rice. So I ate a lot of beans and rice – blended and strained – and those are high- calorie foods, so I started to gain weight. I was in Brazil for eight months and was only sick once.

This was before Instagram had really taken off. I didn’t know anyone else with a feeding tube. I definitely didn’t know anyone else that was blending their own food. I was on my own, but I was like, I’m going to get this right.

That was eight years ago now and I’m still on blended food. I’m also healthy and active. And I attribute it all to that chiropractor who was probably reckless and almost killed me!

You’re very nice to credit him with starting your blenderised food journey. What does your diet look like now?

There are foods that I eat every day. I do raw eggs – which I know people have a lot of feelings about, but I’ve never gotten sick – and then there’s olive oil, peanut butter, Greek yoghurt and cottage cheese. Every day this stuff is going in, along with whatever leftovers we’ve got.

Yes, I’ve heard you describe yourself as the human garbage disposal in your house!

I have four teenagers and they made my food yesterday. I have no idea what they put in it, but I was in a staff meeting today and I burped, and it smelled and tasted awful. I had to apologise to everyone. I think they put kimchi or something that was fermented in it, because I stink!

You’re very trusting, especially of teenage boys.

After today, maybe not.

While we’re on the topic of bodily grossness, your stoma does not behave itself, does it?

It’s horrible. It’s so crazy because my trach [tracheostomy] is perfect, it has never had any issues. But my G-tube is always leaking.

How do you manage it?

I just try to keep my stoma clean and dry. I use a piece of gauze that I change quite often throughout the day. Every time I do laundry there’s gauze everywhere because I leave it in my pockets, and my husband is like, ‘stop it!’

I also use a lot of diaper rash creams, which is kind of gross but I think what happens is similar to diaper rash. Stomach acid leaks out, it hurts and it breaks down the skin. So me and Desitin diaper rash cream are friends.

Are there ever times when you feel ripped off that you don’t get to chew and swallow food?

No, I think I have it good. I feel sorry for people who have to sit down at a table and eat. I just hook it up and keep on doing whatever I’m doing.

The convenience is awesome – especially for someone who’s doing as much as you do. When did fitness become a focus?

I’ve always been somewhat athletic and in college I started running and doing half marathons. Then in 2018, I had a New Year’s resolution to work out for 30 days, just to see what it would be like.

I did all kinds of things, like running, rock climbing, a spin class or yoga videos at home. Thirty days came and went and I loved it. Then I was like, maybe I’ll go for 50 days. And then 100 days. Maybe I could do a whole year.

Somewhere in there my mindset shifted from working out to being intentional with my body and moving it however felt good that day. And it started just becoming something that I craved.

In August 2018 I started my Instagram account, which used to be called Feeding Tube Fitness, because my friends were like, “we’re tired of listening to you talk about fitness. Can you talk about it on the internet, not to us?”

That you did. And your account, now called @hannahvsetzer, has over 100k followers very keen to hear you talking about fitness. Back when you got started, was there much disability representation happening in the #fitspo realm?

Honestly, aside from the Special Olympics, I didn’t really know anything about the accessible fitness community. I didn’t know about adaptive athletes, but I got connected to some really cool ones pretty quickly on Instagram. Especially now that I do CrossFit competitively, I’ve realised there are a lot of really badass disabled athletes in the world.

That said, the fitness industry is significantly behind in including disabled people. And I was like, I’m going to change this. I’m going to make fitness accessible to all people! Which I don’t think I’ve done, but I definitely advocate for inclusion and representation everywhere and anywhere.

How do people tend to respond to the content you put out there?

They’re overwhelmingly positive. But it’s really easy for people to be like, “oh my gosh, you’re so inspirational!” I’m a disabled person who’s working out, which is nothing special. But because people don’t see it very often, they’re like, “This is amazing!”

Sometimes I have people in my community respond to these comments, saying, “she’s not inspirational. Yes, this is cool, but it would be cool if anyone did it, right?” Then, on the other side, there are idiots who go, “you’re not doing that right”. And it’s like, okay, but you’re not doing anything besides insulting people on the internet.

It's a very judgy space – perhaps no more so than in the area of online dating. You and your husband, Brandon, met on Tinder in 2016. What’s it like to date with a feeding tube?

I think I’m way more confident now than I was back then. If I was dating now I would be in a bikini, feeding tube out. I would not give a fuck!

And to be honest, I would say my face is a lot more to take in than my feeding tube. That was a natural deterrent for people, which was good, because I didn’t have to deal with idiot boys. I knew that if somebody swiped left, clearly they were capable of seeing past my face, so that was nice. I think I told Brandon about my feeding tube in our first conversation.

Nowadays, the question is, can Brandon change your G-tube?

No, he would never! He’s fine with it but he does not want to participate at all. One time, I had my feed hanging up in the kitchen on a cabinet and he accidentally stepped on it and ripped my tube right out of me. He was like, “Hannah! Oh my God!” And I was like, dude, it’s okay!

We were foster parents at the time and one of our sons – who was 13 or so – went and got me a new feeding tube and a towel. He could handle it, while Brandon was still like, “Argh!”

You guys were foster parents and now you’re adoptive parents to four teenage boys. Why did you decide to have this kind of family?

I did a lot of genetic testing just to see what would happen if we ever did get pregnant, to see if any of my stuff was genetic, and it wasn’t. We also saw a doctor at my gynaecologist’s office, just to talk about, okay, what would this look like? What happens with my feeding tube if I get pregnant?

The doctor said, “Well, you’ll just have more food, no big deal”. And I was like, no, there’s a hole in my stomach, what happens to that when my stomach gets bigger? And the doctor said, “I don’t know”.

That kind of sealed the deal for us. Okay, not a thing that we’re doing. But we knew that there were kids who needed homes and we had a home that we were willing to be open with.

The goal with foster kids is for them to go home to their families. However, we were asked if we would adopt our first son – the one who helped me with my feeding tube after Brandon accidentally ripped it out. He had a little brother that was in another foster home, so we adopted them both. Then we got a call around Christmas time in 2020 about two more brothers that need to be adopted.

So here we are with four teenage boys who we never anticipated adopting!

Beyond your own family, you’re hoping to support other kids by building a local inclusive playground. How’s that going?

We have the land, but it’s a slow process. It’s also a $2 million project – and we don’t have $2 million! But it’ll happen someday.

How did it feel to walk in New York Fashion Week 2023 – and do you think there’ll come a day when we see feeding tubes showing up regularly on fashion runways?

It was amazing to walk in NYFW and see such representation on the runway and in fashion. I hope there is a day, soon, where feeding tubes and all their glory will be displayed in magazines, on the runway, in TV shows, and in displays in stores.

All of this work you’re doing is raising awareness. When it comes to tube-feeding, what do you wish more people knew?

I wish people knew the freedom you can have with it. People think tube- feeding is like a death sentence when it’s the opposite. You can live and you can thrive and, if you want, you can run half marathons.

Fit for Purpose