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"It’s easy to think everyone recovers the same way – that’s just not true."

It’s Disability Pride Month! We were thrilled to have Adam Fare, who writes extensively about all things eating disorders, disability and equality, join us for a chat.

Hi Adam! Thanks so much for talking with us. Can you tell us a bit about your history with an eating disorder and other disabilities?

I can track my eating disorder back to when I was 11 and I got a virus on holiday that affected my bowel. It was the first time I’d ever really thought about what I was eating. This was just before I started secondary school, which took me right out of my comfort zone – I was the “confident” one, so I was often split up from my friendship group. Knowing now that I’m autistic and have ADHD, I think that knocked me more than I realised.

So I had a bit of a moment where it all “clicked” – I remember a meal where I just wouldn’t eat it. And that was the start of a time where I really struggled. I was acting out, I totally withdrew, and my confidence just went. Most days I was trying not to go to school. The GP was no help, just told me to go home and eat more. Even so, by 15 I managed to get to a place where I was physically stable, just with support from my family – I was playing quite high-level football, and my nutrition got better. But I was still very rigid with food.

And then when I was 17 I broke my foot and that took me right back down again. I was really quite unwell by the time I finished my A-Levels, and not just with the eating disorder. I’d had a bowel prolapse because of the damage the eating disorder had done and a separate bowel issue. After three months at uni I ended up in hospital, only to be put under the care of a general crisis team who basically didn’t know what to do with me.

Since being discharged, I’ve never had formal support for the eating disorder. I’ve had a lot of operations on my bowel, and I now have a permanent stoma, as well as realising I’m neurodivergent. And I’m seeing a lot of the physical impact of having an eating disorder and over-exercising when I was younger. I haven’t grown fully, so my joints are all over the place and my tendons hyperflex, and I have to manage chronic pain from that as well.

So it’s a lot to balance. And it means the ways people often talk about recovery don’t apply to me the way they do to people with eating disorders and no other health conditions.

Because advice you might be given about recovery from an eating disorder can cause issues for your health in other ways?

Exactly. I’m never going to be able to eat intuitively, for example – my body won’t let me. I’m travelling for hours tomorrow, so I’ll need to stick to eating light snack food so I’m not in pain. I’ll always need to have a bit of rigidity over food, but advice around recovery doesn’t consider that. Same with neurodivergence – there’s huge overlap between people with eating disorders and people who are neurodivergent, but being neurodivergent can make it so hard to make changes to things like what you’re eating and your routine. It can be quite traumatic and overwhelming.

We talk a lot about holistic care for eating disorders – thinking about the whole person, not just looking at the eating disorder. It sounds like that’s especially important here.

Yeah – treatment really needs to create a safe space where people can recover from the eating disorder without exacerbating trauma or other conditions. That’s key to making sure other health conditions don’t mask eating disorders, too. I went to CAMHS in denial aged 17 and told them I didn’t have an eating disorder; it was just my bowel condition – and they agreed with me. It’s stuff like that that lets the eating disorder stay hidden. On the other hand, healthcare professionals can fall into the trap of thinking that it’s the eating disorder causing any other health conditions – my bowel condition was separate, and treating the eating disorder wasn’t going to make it go away. It’s the kind of thing that’s not always understood.

We know a lot of people with eating disorders might not look for help for the eating disorder itself, but they access the healthcare system for other reasons. What you’re saying really highlights how important it is that all healthcare professionals know about eating disorders.

Definitely. Healthcare professionals in general need to be more clued up on eating disorders – and that some advice could cause more problems. Look at someone of higher weight who goes to a doctor for gastrointestinal pain and is given information on losing weight – that’s dangerous if the cause of the pain is an eating disorder. On the other hand, you can’t just assume it’s an eating disorder either – someone who’s losing weight and can’t eat might have Crohn’s disease. It needs a really nuanced approach, but a general awareness is helpful. It’s great that your most recent Eating Disorders Awareness Week campaign looked at this – we need to call out where the system isn’t helping or even actively harming people. We need to work together to make it better. And a key part of that is getting people with lived experience involved.

So what could have made your healthcare better?

Well, services can always be better funded! But I want to see support that really considers how different conditions interact with each other. I was put on a low FODMAP diet for my bowel, but without the support I needed to manage that with my eating disorder. I’ve had surgeries where I was pretty much told to go home and do my best to recover, when what would really have helped was both nutritional and emotional support before and after so I could have been physically and mentally prepared. We’re getting better with recovery plans but not for more complex conditions like mine. On the flip side, I really struggle with eating because the pain is so bad, so I can’t always follow dietitians’ advice around my eating disorder.

So we need more long-term support for people with chronic health conditions. There are some early embers of work that will help us understand better how to provide that – I was part of a panel that helped develop training on eating disorders and neurodivergence, and I’ve worked with someone called Bernie Wright who’s done work focusing on the overlap between the two. We could do something similar with other health conditions that are often found alongside eating disorders, too.

At the same time, a lot of things already exist that could help disabled people with eating disorders. They just need tailoring to individual circumstances. But that’s what treatment should do anyway!

Right, it’s that idea of treating the whole person again.

Yeah. I love some of the self-help resources I know are used in Australia – they involve in-depth assessments that focus on holistic quality of life as well as symptoms. We could really do with more of that here, because everyone should be treated as an individual.

So we need more personalised care. We need to see services adapt around people, work with them and their boundaries – and my boundaries are going to be totally different to someone who’s neurotypical or doesn’t have a chronic bowel condition. Recovery looks different for me, too. It’s easy to think everyone recovers the same way, and recovery is the same for everyone – that’s just not true. I’ll always have to balance the eating disorder against other health conditions, and some things I do will look counter-intuitive if you’re just thinking about the eating disorder. I’ll never be “fully recovered”. But I will be able to get through the day without being in agony. That nuance in how we look after and care for people is often missed. It can make you feel like you’ve failed at recovery, when actually, each person’s recovery needs to be about the best quality of life they can have once you consider everything they have going on.

Is there anything you’ve found valuable that you’d like to share with other disabled people who have eating disorders?

I think just to recognise your boundaries, but don’t be hemmed in by boundaries that are driven by the eating disorder. I pretended to myself for ages that there were certain things I couldn’t or wouldn’t do because of my bowel condition when really it was the eating disorder. Then I went completely the other way, put everything down to the eating disorder and ignored some genuine hard lines. It’s about being really honest with yourself and finding that middle ground.

And the other thing is that you don’t have to do it alone. I’ve had my family’s help, and I’ve had peer support – it’s been so good to have a community of people focused on supporting each other. And I know that by making my support network aware of my needs and boundaries, they’ll help me with those too.

There’s a lot that needs to be done, and it’s not going to be a quick process. But highlighting these issues, raising awareness of them, is a big first step towards progress.

Ellen Stickle talks disability, inpatient care and body image

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Ellen tells her story of eating disorder treatment and recovery post spinal injury.

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