Content note: This article discusses disability and chronic illness, restricted eating/diets, gastrointestinal symptoms and medical procedures, sexual coercion and descriptions of intimate partner violence.

When people want to be friendly, they often ask you to lunch.

Food is something we all need – something that brings us together. This makes it all the more isolating when your body refuses to cooperate.

Sometimes, people with little experience navigating disability tell me I shouldn’t talk about my symptoms – that I’m sharing too much information. But it’s hard not to feel a need to explain myself, given how people stare when I’m the only one not eating at the table. They ask questions – curious or pitying – that lead to more questions.

Photo by: Annie Spratt

As a child, I experienced stomach problems, which ate away at my ability to feel hunger over the years.

With each bite of food, I’d feel worse, until even drinking water hurt. But my symptoms were non-specific: nausea, bloating, cramping. Tests revealed nothing. I cut gluten, dairy, histamines and FODMAPs. I took probiotics and vitamins.

When nothing worked, I drank colon prep to restart my gastrointestinal system, like pushing a thumbtack into the tiny hole on a wi-fi modem.

The first time, it helped. The second time, less so. The third time, I had a colonoscopy and EGD – a procedure that uses a camera to investigate the digestive tract – both of which were normal.

I can’t fault my doctors – they had no reason to suspect gastroparesis. That diagnosis only made sense in the context of a genetic disease nobody knew I had.

When you’re chronically ill, it’s easy to feel ambivalent about getting a diagnosis.

On the one hand, you finally have a name for what’s been happening to you. On the other hand, knowing what’s wrong can be confronting. It often means making difficult adjustments.

I was finally diagnosed with gastroparesis in 2023, as an adult. Learning that I had gastroparesis gave me something to work with: to manage my paralysed stomach, I now consume most foods in liquid form. This allows gravity to do the work that peristalsis (the contractions that help your stomach break down food) would for other people. Avoiding fats and fibre helps speed up the process.

After my diagnosis, for the first time in years, I could sleep without stomach pain. I could eat without crying afterward. But I grieved small freedoms: going out to eat with friends, trying new foods on a whim.

Though food often made me sick, I never disliked it. And not getting to choose what I eat hurt, too. It brought up bad memories.

In 2019, I started dating a guy I met at a friend’s party.

He fancied himself a chef and thought I was clueless about food, based on my limitations and symptoms. He acknowledged them at first – though not without judgemental comments.

Over time, these comments turned to demands to try things his way, more and more often. It built up so slowly, that I didn’t realise how controlling he was until we got stuck in COVID lockdown. He decided that he would pick everything we bought at the grocery store, and would plan all of our meals. In his eyes, I couldn’t do anything right; whatever I did warranted lecturing.

If I voiced any preferences, I was judged, shut down, and told that I would like how he cooked it. I didn’t. But I was raised to be polite, and to not waste food.

I would drink tequila before dinner so it was easier to pretend I was happy.

It got worse, as these things often do.

Controlling food led to controlling how we spent our time, and eventually controlling what I could say about the plans he made for us. It devolved to the point where simply disliking a movie he chose would lead to hours of fighting; he’d tell me I was not only wrong, but cold-hearted and cynical.

When I said no to anything – a movie choice, a meal plan, something he wanted sexually – he’d ask again and again, until I finally caved.

I would tell him whatever I thought he wanted to hear, so that he wouldn’t guilt me, shame me, or call me a bad partner for not giving in.

I made myself look like his puppet so I could survive in the shadows and find a way out.

The night he started pretending I was somebody else in bed, I lay awake long after he fell asleep.

Untangling shame, sorrow and revulsion, I came to the realisation that he didn’t care about me, he only cared for his idea of me. It was as if he saw my Ehlers-Danlos flexibility and thought that meant I’d want to reshape my flesh and heart for him.

It took longer than I’d like to admit, but I ended things. I stayed with friends, cried on their bedroom floor, and one morning they took me to the deli across the street for a celebratory brunch. I got French toast, even though eggs make me sick. But it was a special occasion.

Though it would take another two years to get diagnosed with gastroparesis, I was in a healthier place as soon as that relationship ended.

Settling into life free from abuse meant I no longer needed to push myself to eat French toast – or anything else that made me sick – to try to feel in control. I still felt nauseous, but I was safe.

The gastroparesis diet is difficult. There is so much to remember: to drink and eat separately, to stick to liquids whenever possible, to eat simple processed carbs, and to limit fats and fibre.

Protein shakes, Gatorade, soup, plain pasta, yogurt are my go-tos. I get one ‘fun’ dish a day with veggies, legumes and all the things I actually like, often broken up into a few small snacks.

It’s pretty restrictive, even for a medical diet. Which is why, at first, it brought me right back to the claustrophobic grocery store: him telling me, with a smile, where to walk, what to buy, what we would eat and when.

It felt – again – like there was no space for me to say anything, to move, or to breathe freely.

One morning, a few weeks after starting my new diet, I woke up and I wasn’t nauseous. I wasn’t bloated and my stomach didn’t hurt.

I couldn’t remember the last time I’d been able to bend down and tie my shoes without nearly throwing up.

That’s when I realised: this restrictive medical diet isn’t about controlling my body and what I eat. It’s not about power at all. This is an opportunity to heal, to make myself feel better.

It’s an opportunity to listen to, learn to care for, and love my body – paralysed stomach included.

If I give my body the space to tell me what it needs, to say no and – just as importantly – to say yes, I can go days without symptoms.

I just need to stay hydrated, walk to encourage peristalsis and to not double up on triggers. I take some vitamins, carry Gatorade and protein shakes, and I’m getting really into soups. Some days I’m stuck with liquids and white rice, but usually I can eat what I want in small, frequent meals.

I’m still me, and it feels pretty great to not be bloated, nauseous and in pain. It feels pretty great to have energy, to have desire. To feel hunger again. For the first time in years, I feel alive. 

Gastroparesis doesn’t define me. If anything, it’s freeing.

I’m learning to refuse the pressure to be desirable based on other people’s standards, or to perform norms that don’t fit me. I’m learning to resist assaults on my bodily autonomy. I’m learning to feel comfortable being the one person who’s not eating at the lunch meeting. I’m remembering that being different doesn’t mean I’m doing it wrong, no matter what he told me. 

I’m not being forced to eat this way. My body isn’t betraying me.

It’s telling me how to hunger, how to heal.

If this story has brought up any issues that you want to talk about, please reach out for support:

• Say It Out Loud has a list of the LGBTIQ community-controlled services for each Australian state/territory. The organisation encourages LGBTQ+ communities to have healthy relationships, get help for unhealthy relationships, and support their friends.
• QLife is the national LGBTIQ peer-support telephone service for people wanting to talk about issues including sexuality, identity, gender, bodies, feelings or relationships.
• For Victorian residents, Rainbow Door is a specialist LGBTIQA+ helpline providing information, support and referral to those experiencing a range of issues including family and intimate partner violence, relationship issues and sexual assault.
• There is also a growing list of mainstream domestic and family violence services, like 1800 RESPECT, that are committed to LGBTIQ inclusion.

You are never alone.