‘It’s ironic how a bag of poo attached to my stomach could change my whole perspective on life.’: Chronic illness warrior overcomes anorexia, advocates for disabilities, ‘I’m finally comfortable in my skin’

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Trigger Warning: This story contains mention of self-harm, sexual assault, and eating disorders that may be triggering to some.

“When I was a kid, I had all the confidence in the world. I was the youngest in my family but had the biggest appetite. I was feisty and stubborn, yet I had such a zest for life. Neither I nor my family had any idea of what was going to happen. I started getting some occasional stomach pain when I was 10 years old. I tried going gluten and dairy-free but I don’t think either diet helped much. At the time, the pains didn’t impact my life greatly. It was just a nuisance from time to time.

When I was 13, the pains started to get more and more frequent. I tried, yet again, gluten and dairy-free diets. Doctors didn’t really know what the cause of the problem was. I had an endoscopy (a procedure where a tube with a camera goes down my throat to see if there are any obvious problems with my stomach. Fun fact: I still have a picture of the inside of my stomach to this day!). Of course, nothing showed. As the doctors put it, I had a ‘lovely, clean stomach.’

Courtesy of Charlotte Twinley

At this time, I was getting heavily involved with various sports: hockey, netball, athletics, cross country… I loved it all. But I was always getting injured. I would often sprain and twist various joints and I started my collection of bandages. Everyone just thought I was very competitive and just threw myself into the sport (which was true, I cannot deny!). I soon went to a new school and, by the time I was 14 years old, I was even more into the sport than before, particularly hockey and athletics. After having done a very intense hockey training session on Monday afternoon, I woke up on Wednesday morning with paralysis in my legs. I couldn’t move them. It was scary. We had no idea why I seem to have become paralyzed overnight!

After being carried to various doctors by my dad, I had an MRI scan and, much like my endoscopy, it showed nothing. Nothing was seen to be wrong and nothing could explain why I couldn’t move my legs. I was given a pair of crutches to hobble around on and that was that. While I was practicing around the hospital on my new crutches, one of the nurses noticed how I was hypermobile. My elbows were hyper-extended, meaning they can bend further than they should. This didn’t really mean anything to us at the time. A week later, I was able to move my legs again and I was soon able to walk. Everything was back to ‘normal.’

Courtesy of Charlotte Twinley

A few months later, I woke up with extreme stomach pain. This pain became much worse whenever I ate. It was excruciating. I tried SO many different medications from SO many different doctors. One doctor even said I should just ‘live with it’ because she didn’t know the reason for my pains. I lost a lot of weight because it hurt to eat. Due to the nature of our society, I thought it was a ‘good’ thing I lost weight. However, at the time, my thoughts were no more than that. I was proud of the weight loss but I wasn’t looking to lose any more weight.

After a while, I was finally referred to a consultant at my local hospital to see what the problem was. He had, very coincidently, just been to a conference linking hypermobility to stomach pain and was able to refer me to a specialist in this area at the Royal London Hospital. After seeing this specialist consultant, I was able to get a diagnosis of Hypermobile Ehlers Danlos Syndrome. Ehlers Danlos Syndrome (EDS) is a connective tissue disorder that affects the collagen in the connective tissue, which is in almost any part of the body, particularly the joints. There are actually 13 different types of EDS. I have the hypermobile type. It’s a genetic condition that happens when a particular gene mutates. Collagen is in lots of different places in the body, including muscles, skin, and ligaments, and it can make these parts of the body extra ‘stretchy.’

Courtesy of Charlotte Twinley

This explains my temporary paralysis in my legs. I had overstretched the ligaments (made of collagen), which caused my muscles to overstretch. When my muscles were overstretched, they couldn’t contract so they couldn’t move! After lots of very invasive and embarrassing tests to test my digestion, it turns out my stomach pain was due to something very similar: the walls of my colon kept overstretching rather than contracting to push the food through. In other words, I was severely constipated. I was put on lots of gut stimulating medication and laxatives to help with this. I had also developed several prolapses within my rectum (a rectocele, a rectal intussusception, and a rectal prolapse) that occurred due to the weakness in my intestinal walls.

This was all happening when I was 15 years old and, as you can imagine, it was hugely embarrassing. I couldn’t face the idea of telling my friends what was actually wrong with me! I felt so bad about myself and I hated how my body was. This soon led to me experiencing depression and I also ended up self-harming as well. I then remembered how happy I was when I first lost weight due to the pain when I ate. This contributed to me developing anorexia nervosa. I tried my best to hide what I was feeling at school. Living with a chronic illness at the same time as battling with your own mind is so difficult. With GCSEs on the horizon, it all became extremely stressful. I was in a relationship a the time and that became hugely strained by this as well. My parents soon noticed what was going on with me and we got a referral to the Children and Adolescent Mental Health Service.

Courtesy of Charlotte Twinley

Unfortunately, the mental health nurse didn’t take me seriously at the time (I denied I had a problem anyway). She said I wasn’t underweight enough to need help. My BMI was still healthy, even though my mental state was far from it, and so I was basically dismissed. This still makes me slightly upset today but I know it wasn’t her fault. It was due to the lack of resources at the NHS. Unfortunately, anorexia is a very competitive illness and so when she said I wasn’t ‘ill enough,’ that just created a target for me. And by not eating, I was putting more strain on my digestive system and so I had to increase my laxatives, leading my body to become dependant on them as well. If I had gotten the right help from the start, my future circumstances could have been a lot different.

Still, my parents still kept an eye on me and we did argue about it all occasionally – which made me feel even worse about myself, as though I was a bad daughter and a disappointment. My depression and anxiety were getting worse by the day. I managed to get by without being too unwell when I did my GCSEs and I, surprisingly, did well and I actually enjoyed my summer. When I went back to school in September, everything came crashing down completely. I started off trying to turn things around. I really didn’t want to be ‘this person’ anymore. I tried so hard. But I soon spiraled into the old habits from before.

Courtesy of Charlotte Twinley

My depression and eating disorder soon got the best of me. My boyfriend had just left for university
and the strain was too much and so our 2-year relationship ended. This broke me. It was my first heart break after all. And everything was just made worse. I wouldn’t eat, I couldn’t concentrate in lessons, I hurt myself more… it all became too much. I then had to have braces fitted, followed by surgery in my mouth due to complications which, again, made it painful to eat. It was genuinely painful but I also used this as an excuse not to eat. After a month or so, teachers were emailing my parents saying they were getting increasingly worried. My parents got back in touch with my GP, who was furious CAMHS hadn’t taken me seriously at the time and I had become too physically ill. It got to the stage where I was dangerously underweight. There were meetings with the school nurse and some of my teachers. Everyone was freaking out but all I wanted to do was disappear. I couldn’t have cared less.

Christmas soon came and to date, it is probably my family’s worst Christmas. It was filled with tension, arguments, tantrums, and disagreements. When my grandad came to visit, he couldn’t stay as the sight of me tore him apart. As soon as we ate lunch, he left. I had never felt like such a disappointment… but I know I couldn’t change. The eating disorder ‘voice’ had completely taken over. After I went back to school in January, 2 days later, I had (what I thought was) an appointment with CAMHS. However, when my parents and I walked into the room, it was filled with mental health professionals including nurses, a psychiatrist, a dietician. I just fell to the floor as I knew… it was all over. I felt like they were coming to ruin my life when they were actually trying to save it.

Courtesy of Charlotte Twinley

I wasn’t allowed to go back to school until I had gained enough weight. I was also given a physical exam and was told my body was under a lot of stress. I was always cold, I was extremely malnourished, I was losing the hair on my head, and I had even started growing fine hairs on my back (called lanugo hair) so my body could keep itself warm. They all wanted to admit me into an inpatient ward but my parents fought to keep me at home. In hindsight, that alone made the biggest difference to me and my recovery. My parents were amazing for my recovery. They worked with me to create a diet plan the doctors were happy with, they committed to taking me to therapy several times a week, they taught me how to cook and I learned about different foods and flavors… helping me fall in love with food again.

With every weigh-in at therapy came more tears and distress. Over the next 5 months, I gradually gained weight, which was horrible to come to terms with, and I hated them for it at the time. They know I didn’t mean it though. Anything that may have been used to hurt myself with was hidden and my mom even slept in my room at times to make sure I wasn’t exercising excessively during the night. This was an incredibly lonely time for me as well. Being completely home-bound with all my friends busy with their lives at school and the things going on there – I missed out on so much.

Courtesy of Charlotte Twinley

Eventually, I gained enough weight to go back to school just in time for my AS levels. Of course, I didn’t do too well in these but considering I had missed out on a good chunk of the school year, I didn’t do too badly. Of course, I was still wasn’t mentally recovered and had my friends keep a careful eye on me. Unfortunately, I was very quickly discharged right before my 18th birthday so I wouldn’t come under the adult services. This meant I was actually discharged much too soon into my recovery. People didn’t realize I was still struggling. I was still terrified of certain foods and obsessed with exercising. This soon developed into orthorexia: an obsession with healthy eating and exercise. I did still lose weight again, but much slower so no one even realized.

Courtesy of Charlotte Twinley

When I was 18, I tried to make up for all the social occasions I had missed so I went out to clubs as much as I possibly could, putting further strain on my body. Amazingly, I managed to do my A levels, as well as redoing last year’s exams and got into university to do Cardiac Physiology. Over the summer, I met my current boyfriend, who has been absolutely incredible to me to this day. We’ve been together for over 4 years now! I had lost quite a bit of weight during the summer – my mom knew this and had a word with me. I just said I’d promise I’d get better while I was at university. I really did try to turn it around. But again, as I’d missed out on so much while I was homebound, I ended up taking advantage of Freshers Week by doing ‘out’ out every night for 2 weeks, and it destroyed my physical health.

As with any chronic illness, it’s important to pace yourself. I wanted to be normal and part of everything. It came at a price though. I became so ill and my body gave up on me, leaving me to live on soups and smoothies as solid food couldn’t be digested and caused extreme pain if it wasn’t blended up. My joints were also partially dislocating and clicking a lot, causing a lot of pain. As well as this, I wasn’t in the mindset to actually take part in the course I was doing and I wasn’t enjoying it. On top of this, I was sexually assaulted by a guy at the university. I reached out to a local crisis team and the university counselor but decided I just couldn’t stay there anymore. I had to drop out and go home. I lived on soups and smoothies for a bit longer, upping my laxatives whenever I ate anything that was solid, as well as drinking lots of coffee for its ‘magical abilities’ in that area.

Courtesy of Charlotte Twinley

About 6 months later, in June 2017, my body could not even digest soups and smoothies anymore and coffee no longer worked. I was severely constipated. I ended up having these nutritional supplement drinks to make sure I didn’t lose any more weight and I had as much nutritional support I could. Funnily enough, I was actually the one who suggested these high-calorie drinks, as I didn’t want to go back to how I was, what my eating disorder did to me. After 5 months, I saw a colorectal surgeon who didn’t really know what to do. I had read about stomas online and asked the surgeon if that’s a possibility. He wasn’t sure, so I went and got a second opinion from a specialist colorectal surgeon at St Mark’s Hospital in Harrow, London. Thankfully, this second surgeon agreed something had to be done and a stoma would be a good option for me.

I did as much research as possible and came across some great accounts on Instagram breaking the stigmas of poo and encouraging body acceptance. This inspired me. I started sharing my journey in the hope it would help others and help raise awareness of EDS, stomas, and eating disorders. After a whole year of a liquid diet and not eating, in June 2018, I had the surgery I needed.

Courtesy of Charlotte Twinley

It was difficult at first but I was able to eat a mousse a few days later, the most solid thing I had eaten in ages… and it was delicious! I still never felt hungry, as I just wasn’t used to eating, and so the process of ‘weaning’ myself began! It was so weird eating food again. My jaw even began to ache from all the chewing I wasn’t used to. Months later, I was able to go out and eat and, what’s even more important, I want to eat and finally fully appreciate food again.

Courtesy of Charlotte Twinley

I’ve had my stoma for 2 and a half years now and I’ve learned so much during that time. I’ve been given so many amazing opportunities to be a part of campaigns for those with disabilities and bad body image – a few of them included wandering around London in my underwear! I’ve met some amazing people and I’ve been able to help other people by sharing my story (and that means the world to me!). I’ve been featured in several articles, helping to raise awareness for stomas, EDS, and eating disorders.

Courtesy of Charlotte Twinley

For the first time since I was 11 years old, I actually feel comfortable in my own skin and comfortable with who I am. I look in the mirror and I don’t cry anymore. It’s ironic how a bag of poo attached to my stomach could change my whole perspective on how I feel about myself. I want to be the girl I needed to see when I was struggling. I want to be the best role model I can be. Everything I do and am doing is for my younger self and all the other people who may be struggling with the same things I did.”

Courtesy of Charlotte Twinley

This story was submitted to Love What Matters by Charlotte Twinley. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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