The phrase ‘the best years of your life’ usually refer to your teenage years. Parties, surrounded by friends, feeling and being rebellious, discovering new things and then, there’s school – studying for the most important exams that supposedly ‘set you up for life’. I always thought that having these exams at the most vulnerable time of our lives was strange. Teenagers are figuring out who they are, dealing with drama, going through puberty; there’s enough going on as it is.
For some, there’s even more going on. For example, from the age of fourteen my body started to become more fragile than before. I had always loved sport but began spraining and twisting my joints more and more. I remember, two days after fitness training for hockey, I woke up and couldn’t move my legs. It was terrifying and we had no idea why I seemed to have become paralysed from the hip down overnight. After being carried around to doctors and hospitals and getting an MRI scan done, nothing was found and no explanation was given. I was just given some crutches to use to hobble around on and I gradually started to walk again (fun fact: I still have those crutches today, seven years later).
A few months afterwards, I woke up with extreme stomach pain. And whenever I ate, it felt as though I’d been stabbed 20 times in my stomach. After seeing several doctors – including one who told me that I had to ‘get over it and put up with it’ – there were still no answers. I lost a lot of weight due to the pain when I ate. It was strange that, although I really was in agony, a little part of me felt a bit happy that I’d lost weight. I think it was because we are surrounded by diet campaigns and it seemed as though every advertisement I saw was to help you lose weight. I felt as though it was a goal that we are all predispositioned to have. I do have to stress: my pain was genuine and at this point, I hadn’t had any damaging thoughts and didn’t avoid food on purpose. My digestive system just wasn’t working properly.
My GP referred me to a consultant at the local hospital who noticed that I was hypermobile and had just gone to a medical conference linking hypermobility to digestive issues. He then told us about a genetic medical condition called Ehlers Danlos Syndrome (Ehlers Danlos Syndrome) – a connective tissue disorder, affecting all of the collagen in the body which supports joints, muscles and organs. I was then referred to a specialist in London, put on some gut stimulating medication and laxatives, advised to go on different diets to see what worked for me (I quickly found out that gluten and dairy were not my friends!) and I was sent for some tests to determine what was actually wrong with my digestive system.
Long story short, it turns out that my digestive system works very slowly and has structural abnormalities, meaning that digesting and passing food in general was difficult (I have colonic inertia, a rectocele, a rectal intussusception and a rectal prolapse). This was because Ehlers Danlos Syndrome has caused certain parts of my digestive system to become weak as it doesn’t have the strength and support it needs from my muscles in the digestive system. As a teenage girl, these problems made me very self-conscious as I was quite embarrassed to explain this to my friends as it was essentially all about how I was constipated – I felt abnormal. It is a very taboo subject, after all. I had this condition which no one knew about and I became the girl who couldn’t eat certain foods and who got injured all the time as my joints are a lot more susceptible to sprains, subluxations etc. I ended up giving up a lot of the sport I loved, although I could still do some running. (Giving up hockey was devastating.) I became quite withdrawn and didn’t feel like I fitted in with the majority of people at school.
depression soon took over and, boy, it really did take its toll. I was in a relationship at the time which often became difficult. I tried my best to hide my feelings at school – I became quite good at it – but at night, when I came back home, I was self-harming myself for being ‘different’ and hating who I was and how I looked. Living with a chronic illness at the same time as battling with your own mind is absolutely terrifying. I started thinking how I could fit in with others at school and how I could feel better and less ashamed of who I was. I envied how everyone’s bodies worked properly. I then remembered how I felt when I first lost weight – I felt good; as though I had ‘achieved’ something, thanks to our messed up society. The images I saw on social media didn’t exactly help my confidence either. These can be destructive and only display society’s ideals and when I think about this now, it actually sickens me and fills me with so much anger about the number of lives that these have ruined or even destroyed by trying to live up to these ‘ideals’. I will not describe the images that I used to idealise, but they were extremely unhealthy. I soon began to hate everything about the way I looked. I hated my stomach and the way it bloated so much, the way my legs looked and I called them ‘stumpy’, the way my nose looks big, the way my ears stick out, the gaps between my teeth.. There was very little I could stand to look at in the mirror.
My medication (mainly laxatives) increased to help my digestion that I was making worse by not eating. My parents soon caught on and arranged some therapy on the NHS (through CAMHS; Children’s and Adolescent’s mental health Service) – which didn’t help at all since I wasn’t dangerously ill or underweight so I wasn’t taken seriously at that time as my BMI was still in the ‘healthy range’. 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. I soon felt as though the only thing I was good at was hiding how I felt and not eating. 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 – a few times I skipped meals or self-harmed, but it wasn’t as frequent as before. It was after summer that broke me.
I started sixth form in September with a slightly different mind-set; a positive mind-set – at first. But I soon spiralled into old habits and it was much worse this time. By October, things had gotten so bad that my two year relationship ended – looking back on it now, I know it was the best thing to do but that didn’t make things any easier at the time. It was so difficult and depression smacked me in the face even harder – it was my first heart break after all. I didn’t want to eat at all, I harmed myself a lot more, I couldn’t concentrate at school and became even more withdrawn from my friends. My main focus was on how much weight I could lose. I thought that by doing that, all my problems would go away. It’s a horribly competitive illness and nothing was ever enough and the goals were always set higher and higher. It was never going to be enough until it was too late. I very quickly lost lots of weight and became dangerously ill – not that I believed I was ill. The school contacted my parents, who contacted my GP and arranged for some different mental health professionals to see me. Christmas soon came – the most terrifying time for those with eating disorders as food surrounds us. It was probably the most stressful and scariest Christmas we’ve had as a family. When my Grandad saw me, he couldn’t even stay as he was too upset to even look at me.
After the holidays, I returned to school for only two days before being told I couldn’t go back until I had gained weight. My parents took me to a meeting where we were met by the mental health professionals that had been arranged to meet with us – who actually took me seriously now that this had become life-threatening. The nurse told me I was one of the worst cases she had seen in a long time; I needed to be hospitalized and put on a serious diet to gain weight. I remember just falling to the ground at that moment. Screaming. Having a massive panic attack. Wanting to die. Anything to escape from the hell I was trapped in. It’s still one of the most terrifying moments of my life. I was incredibly lucky as my parents fought so hard to keep me at home (my dad works from home and my mum worked just next door so they were able to persuade them to keep me at home where they would keep an eye on me).
Fighting to prevent me from going into hospital and committing to take me to therapy at least once a week is one of the greatest things my parents have ever done for me. Over the next five 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 mum even slept in my room at times to make sure I wasn’t exercising excessively during the night. They taught me how to cook and I tried lots of new foods. I found them delicious – but I wouldn’t dare admit it at first. It took ages until I started enjoying food again instead of crying whenever I had to eat. This was an incredibly lonely time for me as well; all my friends were busy with their lives at school and the things going on there – I missed out on a lot.
I eventually gained enough weight to go back to school, just in time for my exams. My teachers had sent me work to do from home and I received a lot of one-to-one lessons from them. Although I had physically recovered, I was still very fragile, mentally, and it was extremely difficult to not return to old bad habits. Needless to say, my closest friends were keeping an eye on me and I always went home for lunch so my family could make sure I was eating. My AS level results weren’t great and I did have to retake a lot of them the following year – not ideal!
My final year at school. I had been discharged from therapy now that I was at a healthy weight. It still didn’t mean that I was mentally recovered. It ended up being slightly different. I had a better relationship with food but it was all very controlled. I allowed myself to eat – but I still restricted myself in eating a lot of things and often stuck to my ‘safe foods’ and I made sure I was moving around a lot and doing lots of exercise; as I wasn’t losing lots of weight very quickly and was still eating, I think I got away with it. My dysfunctional digestive system kept getting worse and worse and I still had to increase the laxatives I was taking but after doing this after a few years, I just got on with it. This carried on until I left for university. Over the summer I had lost quite a bit of weight – my mum knew this and had a word with me. I just said that I’d promise I’d get better.
I really did try to turn it around at university. Unfortunately, with Ehlers Danlos Syndrome you need to pace yourself as it is extremely easy to overdo it. I didn’t take this into consideration by going out every night at Freshers – every night for two weeks. I felt that I ought to ‘catch up’ on what I had missed when I was home bound; 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 (as I was severely constipated). So I came back home, upped my laxatives (again) and slowly started to increase the amount of solid food I ate, whilst relying on lots and lots of coffee for its ‘magical abilities’ with the digestive system. I started to eat solids again – still being a little cautious of ‘unsafe’ foods (ie. food high in calories) until one day in June 2017, I couldn’t eat at all, yet again.
This time, even soups and smoothies made me constipated and I ended up on Ensure Nutritional supplement drinks. Five months later, my mum and I went to see a colorectal surgeon in London that I had been referred to a while ago to see if surgery could help. I read, before the appointment to see if I had any options, that some people with Ehlers Danlos Syndrome had a stoma in order to bypass the most problematic areas of their digestive system (eg. the colon and rectum for me). A stoma is a bit of your intestine (small or large) that sticks out your stomach and waste passes through it, into a bag – also known as an ileostomy, colostomy or urostomy – depending on the type. This option was the only one that gave me hope as my quality of life was awful; I was on a liquid diet, took loads of laxatives and became incontinent because of them. The surgeon told me that he wouldn’t want to do anything as my case was too complicated. When I asked about having a stoma, he seemed… sort of open to the idea but still reluctant to do anything as he didn’t think it would help.
We got a second opinion from another colorectal surgeon and voila! He said that something had to be done as I couldn’t keep living like this and that overtime, all my digestive problems would just get worse and worse. I soon got a date for my ileostomy to be formed and it all became very real. I turned to the internet for some advice from others who had stomas and I found this incredible community on Instagram, sharing their everyday lives, being positive whilst still sharing the problems and difficulties that come with having a stoma and, as well as this community, I found another one celebrating diversity, body acceptance and confidence and self-love which has (and still does) inspire me so much. I tried stoma bags on so I knew what my body was going to look like so I could get my head around the surgery and how I was going to be after. In June 2018, after just over a whole YEAR of a clear, liquid diet, I had the surgery that I hoped would change my life for the better. It’s ironic how I became so desperate to eat food again.
Two days after I had the surgery, I was able to have a vanilla pudding and wasn’t taking any laxatives and my stomach and small intestine were okay and they worked! I still never felt hungry and so, the process of ‘weaning’ myself began (not many people are weaned into solid food twice in their lives!). Months later, I’m able to go out and eat and, what’s even more important, I want to eat and finally fully appreciate food again. A year after my surgery, I tried gluten and dairy again. This was terrifying for me, as I was so traumatised by the pain they used to cause me. I tried little bits, one thing at a time. And I’m so please to say that I am now able to eat gluten and dairy. This is because it was my colon that couldn’t digest these (due to the FODMAPs) and now my colon is out the way, I have no problem digesting bread and cheese anymore.
For the first time in 6 years, I actually feel comfortable in my own skin and comfortable with who I am. Sure, I might have one or two bad days every now and then but I push past it, I can eat what I want and I do not feel guilty. I don’t exercise excessively in order to lose weight and to fit into society’s ideal of what is normal and how we are supposed to look. I’ve come to love and accept the way my stomach, legs, nose, ears and teeth look, instead for getting surgery – like I originally had planned to. 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.
Today, I’m in a very happy relationship, where he understands and accepts my chronic illness, and I’m taking part and modelling for campaigns about diversity. I’m dedicated to raise awareness for Ehlers Danlos Syndrome, for stomas, mental health, for eating disorders, for diversity and for encouraging people to love and accept their bodies the way they are. 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.
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