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Disability and my relationship with food

ella_jane Member Posts: 4 Listener

My name is Ella, I’m a writer and I live with Borderline Personality Disorder (BPD) and Ehlers Danlos Syndrome Hypermobile Type (hEDS).

For pretty much all my life I’ve lived with panic attacks and sensory overload. The first panic attack I remember was when I was around four years old. Since the age of ten I’ve also lived with chronic pain. They’re both a part of my life that I can’t ignore but I bumble along as best as I can, usually with my nose in a book!

I also have a slightly complicated relationship with food.

My altered relationship with food

With both the BPD and the hEDS it’s felt like a slow and creeping increase. Both of them silently crept up on me over the years, getting slowly worse until they became impossible to ignore. They are both now part of my everyday life, it’s only in the last couple of years that I’ve really started learning how to manage it.

With increasing pain and fatigue, decreasing mental stability and a smattering of classic childhood bullying, it’s not entirely surprising that as a teenager I turned to comfort eating. Food made me feel good. It was something sweet, positive that could help me ignore my issues. The problem was it wasn’t just the occasional chocolate bar. I started sneaking food to binge when I was in my room, overindulging whenever I could. Of course I put on weight, but it was easy to ignore. Just avoid mirrors right?

I reached a turning point when I was around sixteen or seventeen. One evening I ate so many biscuits that I felt full, nauseous even. And despite the fact that I felt ill and started crying, I continued to eat them. I needed to take control. My relationship with food and my reliance on it as a source of comfort or distraction had become unhealthy.

Trying to turn things around

I started a weight-loss journey that is familiar to many. It was simple. Eat less, exercise more. The problem was I very quickly exchanged one unhealthy habit for another. All too soon it stopped being about being healthy and reaching a healthier weight. It became about control.

A young woman smiling in a restaurant

As I’ve got older my pain and fatigue have worsened, but it was only recently that I received a diagnosis. During university I had no answers, no reason for why I was so easily put in pain or fatigued. Why was my stomach always playing up? I felt like everything was getting worse and I didn’t know why. I couldn’t control it. The one thing I could control however was what I put in my body. It started small, counting the items I ate in a day, then the calories in them, then the total calories consumed in a day. At the time I didn’t think I had a problem. I wasn’t dangerously skinny so I didn’t have an eating disorder right? It didn’t matter that there were days that I only ate 150 calories, I wasn’t thin, so I was fine, right?

What have I learnt?

Looking back now I’m shocked at how little I ate and how obsessive I was. It’s taken a lot of counselling but I’ve reached a point where I can appreciate everything my body does for me on a daily basis. It get’s me up, allows me to play with the dog, read, write and draw. To do all this, I need fuel and healthy food. The thing I’ve learnt most is that the better my relationship with food, the better my overall mental and physical self as I have the energy to do the things that make me happy.

Have you ever struggled with food? How do you maintain a healthy diet? Let us know in the comments below!


  • April2018mom
    April2018mom Posts: 2,868 Connected
    Thank you for sharing your story Ella! 

    I like to think that I have a pretty decent relationship with food. I try to eat healthily most of the time. I prefer salads over fried food seriously and go dancing one night a week. My little boy has had constipation in the past which was caused by his primary disability, open defect spina bifida. I myself have tried keeping a food diary a long time ago to see if that would help me. It did somewhat. I did the same when he was a baby. Healthy eating is very important to me personally. We carefully limit the number of chocolates and sweets he is allowed to have and encourage him to move around and exercise. At every meal we have a cup of water to drink. 

    So I have basically eliminated rice from his entire diet and he eats a lot of fresh fruit and vegetables to aid with his bladder issues. We do have to be careful at all birthday parties, weddings and other events but it is totally doable. It is not much different from having a child with full bladder control really I think. I honestly believe it is about self control and making informed choices. Healthy eating need not be boring right? Far from it.

    But I wholeheartedly reject those crazy fad diets. They do not seem to work at all. There is no evidence to justify following such a diet. Try replacing food with other fun rewards. For example instead of eating chips, you could have a nice new computer game, have fun at the zoo or take up another fun hobby. Same goes for other fast food like burgers or pizza. Rather than always having them, you could play a active fast paced game of tennis or golf or meet some friends.

    What about a massage? Or a facial or manicure/pedicure. I replaced crisps with other experiences and treats like a new giftcard or tickets to see a live concert, basketball game, movies, books, art supplies, and so on. Every time I am at the supermarket I take a list with me. That way I know what to buy. 

    I am not tempted by unhealthy food. 
  • Bazalad
    Bazalad Member Posts: 21 Connected
    Hi, I am Barry Smith and I am 41 years old from Ayrshire which is up in Scottland. I suffer from Cerebral Palsy which is a phyiscal Cerebral Palsy, down to me having this I am in a power wheelchair and use a Lightwriter what is a communication aide, because people find it hard to understand what I am trying to say to them with my own voice. once I where doing a heath eating course I was told because I suffer from CP I had to eat more because I had jump more what I cant stop


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