Ellen Stickle talks disability, inpatient care and body image

In March 2021, Ellen Stickle left work and got into her boyfriend’s car. He was driving her home when they were involved in a major traffic accident.

Thankfully, they made it through (this isn’t that kind of story).

But Ellen suffered life-altering injuries that left her paralysed and struggling with her body image. She went from being sectioned at a spinal unit in Glasgow to eating disorder inpatient care in Aberdeen.

This is her story.

Ellen, thank you so much for talking to me today. Can you tell me what happened to you after the accident?

Honestly, I have no recollection of it. I was unconscious the whole time. When I arrived at the hospital, I was put on a ventilator and a feeding tube. I was attached to all sorts of machines. I mean I’d broken so many bones and I had to have a skin graft too.

My downward spiral happened so quickly.

Why do you think that was?

I was just angry at the world, and I took it out on myself. They expect you to lose a bit of weight at the beginning of your recovery, but mine just kept coming off.

Was that the start of your eating disorder?

No, it actually started before my accident. I had bulimia and I was treated as an out-patient. Because of the accident, my arm function was really limited so I had to learn to feed myself again. I had to relearn everything actually.

So, my old eating disorder is very different to what I developed after the accident. Because I obviously couldn’t do the behaviours associated with bulimia anymore.

So you stopped accepting food?

Yes. But I think a large part of it was down to the loss of every aspect of my life.

I now need someone to help me get dressed. I need help with my bladder function. I need someone to wash me and get me into my wheelchair. I don’t get a minute on my own. And of course, eating disorders are very secretive - and I wasn’t allowed to be secretive.

It’s so difficult for me to express feelings around my eating disorder. Especially in relation to my paralysis. The first word that comes to mind is ‘lonely’.

It’s a strange one where you’re surrounded by people and yet still isolated.

Exactly. I was constantly around carers. It was fine, but sometimes you do need that peer support. It’s nice to be able to vent. But at the eating disorder clinic, I was often kept separate from the other patients.

Why was that?

My morning routine took up quite a lot of the day. Same with getting into bed. So it became a case of what was manageable for them.

For the nurses?

Yeah. Sometimes they did let me stay up later, but to be fair I’d get tired too. I wasn’t tired of people, I was just tired of my wheelchair. It’s not always comfy, especially as I was underweight at the time.

So I felt like I was constantly surrounded by nurses. But perhaps that made other patients feel like they couldn’t approach me. And I guess they’d probably never seen someone with my injuries.

For a long time I was also eating separately from the other girls, because I didn’t want to be seen eating. My arm wasn’t moving as it used to, and it would take me longer to eat. Sometimes I’d drop food, and I didn’t want them to think it was on purpose.

I can imagine. Were you given the time and support to feed yourself?

Not always. And if a nurse was trying to feed me, I’d refuse. I mean, really it was any excuse not to eat. And I was on an NG tube, because I couldn’t swallow for ages, and I hated it. I had lots of fights with dieticians.

I just kept thinking, I’m paralysed now. I can’t move. Surely I don’t need the same amount of calories? The dietician, bless her, tried to explain that my body was in shock. And it would need the extra nutrients to heal my injuries.

To be honest, a part of me just gave up. How do you find motivation to recover from your eating disorder when all of your reasons for staying well are taken away from you? I used to love working, running, climbing, baking and going for walks. How was I supposed to get better with absolutely no drive to fight?

Were you able to open up to anyone about how you were feeling?

To other patients at the spinal unit actually. They were brilliant. But that’s before I was moved to the eating disorders unit, which was a completely different environment.

Why were you moved?

A couple of things set off alarm bells really. At one point I told my therapist that I couldn’t think of anything worse than being fat and disabled. And about a week before I moved, I was still talking about how big my thighs seemed to me.

Do you think you were struggling with body image?

Yes, very much. I think there needs to be more education around body image.

At the spinal unit, they’d offer classes about catheter and bowel care, sexual health and spinal injuries. But no one ever mentioned that my body image would change. Noone ever told me how much I’d struggle with my ‘new’ body. Or how I could cope with those changes. It would’ve helped a lot.

Did you get any support on that front at the eating disorder unit?

It was very weird. Everyone wanted to talk about the eating disorder, but no-one wanted to acknowledge that I had physical challenges. Or that my life had just been flipped.

And I thought that if I opened up, they’d keep me in there for longer. So I shut myself off and pretended I was fine. Like nothing was bothering me or triggering me. And actually, a lot of stuff was going on, but I just wanted to get out of there.

I’m so sorry. That must’ve felt really isolating. Where are you now in your recovery?

Physically I’m much stronger, and I've made a tremendous recovery from my brain injury. I’m just so grateful. Plus I’ve got new goals. For example, I want to be able to stand up (obviously not by myself). I tried it before, when I was really unwell, and I’d just faint. So I’ve set my mind on making it all the way up.

I also want to get a stoma bag. I know it sounds ridiculous, but they wouldn’t give me one before because of my weight. And I still need district nurses to come and help me every day. So it means I have no control of my life. I’ll never get to go on holiday without a stoma bag!

It doesn’t sound ridiculous at all. Your stoma equals your recovery – and your freedom.

Yes! And so is my wheelchair. Right now I’m on a powered one but I’d like to be able to use a manual wheelchair. I don’t know if I’ll ever get there, but it’s in the back of my mind.

I’ve seen some pretty amazing wheelchair designs. Have you ever thought of pimping yours out?

Oh that would be so much fun! The thing is I’m not great at art.

Now I know you’re lying. I’ve seen your art therapy paintings.

Oh I don’t know, I prefer writing! I think I’m better at it. Although I had a great time with my art therapist. She really helped me.

It’s always the art teachers eh? What else do you enjoy?

I love listening to podcasts and audiobooks, I write in a diary app and I’ve just tried my first off-road wheelchair. It was so much fun. Even without walking, if I can get outside in nature, it’s still amazing.

I've also worked my way through most thrillers on Netflix. I have a degree in criminology so I love trying to guess who dunnit.

Brilliant! Any recommendations for our readers?

I’ve just finished Liar on Netflix. It was really good. I also quite enjoyed Safe, The Stranger and Close. Also you can’t go wrong with Gogglebox.

Agreed. Thank you so much for sharing your story with us, Ellen…I really hope others in a similar position read it and find comfort in knowing they’re not alone.

Me too. Community makes all the difference and I’d love to meet others in a similar situation.

Would you have any advice for them if you did?

Just that they should never compare their recovery or injuries to someone else’s. We’re all different and that’s okay.

And what about those who want to help loved ones with their disability or eating disorder?

I’ve actually written a list of helpful and unhelpful comments that were made to me. I’d probably share those with any and all carers and friends, so they don’t say the wrong thing.

Thanks again Ellen, you’ve been incredible.