Loss of Appetite and Weight Loss

Heads up I’m ruining my chances of ever getting another date with this opening paragraph. So, I went for friendly drinks with an ex and they agreed they would share an embarrassing story with me if I told them one of mine. I told them that (at that point in time) I currently had thrush. I told them I had thrush with so much confidence that they decided my story wasn’t embarrassing enough to justify them sharing theirs and that I had to think of a better one. I personally think telling an ex I had thrush was very embarrassing, but I guess this just proves embarrassment can be masked by pride, bravery and pretending to be confident. I want to state here that thrush is a taboo subject, but it should be talked about more because it’s a health issue and it shouldn’t be embarrassing. (Also I guess Crohn’s can make people more susceptible to thrush), which is why I’m reluctantly bringing it up in this blog. Now to link thrush to the main focus of my blog, I’ve felt a similar awkwardness with talking about problems with my appetite and weight loss – I try to talk about it as little as possible – but it’s the main issue I struggle with due to my medical condition, so I think it’s important to discuss it.

On a serious note, my weight is now lower than it was when I was diagnosed and hospitalised 2 years ago. I'm turning 23 and my weight is probably the lowest it’s been since I was 14. I sometimes struggle with appetite loss which makes it hard for me to eat even though I know I need to and I want to eat, and furthermore, my body is ill and doesn’t absorb food properly, so even when I am able to eat lots of food, my weight can still go down. I am very scared and worried about this.

The main reason I didn’t write this blog a long time ago was because I didn’t know how to approach it without being insensitive. I do feel like there is an unwritten social rule that you don’t complain about your weight if you’re thin – yes, I can eat wherever I want and I don’t have to worry about putting on weight, but  weight loss and loss of appetite has a massive impact on my physical health and wellbeing.

There’s not much help available online for long term appetite loss, it doesn’t seem to be an issue which particularly exists on the internet, or if there is any advice out there other than eat little and often, then I’ve struggled to find it. I get a phone call every six months from a dietician who tells me there are 50 calories in 2 jelly babies. I also don’t feel very comfortable discussing my issues with eating with my peers and will explain my reasons for this later in this blog.

The impact of weight loss on my wellbeing and physical health

I know it’s a privilege to be able to eat what you want and not have to worry about putting on weight, and it’s a privilege that I have taken advantage of on many mornings with a sausage and egg McMuffin before work. I’m not gonna deny that I enjoy this. But I do feel very bloated and very nauseous very easily. And a diet of greasy fatty foods is not going to provide you the nutrients you need to feel energised or happy within yourself. Speaking plainly, I am underweight and I am fully aware of the health risks this comes with. I feel so guilty and angry with myself when I go to sleep at night if I haven’t eaten enough – And I’m fed up with feeling like that. And when you still seem to lose weight no matter how much you eat, eating fatty foods becomes a big pressure, almost a chore, and it’s not always enjoyable.

I do have an odd diet; I like to eat lots of meat by itself. I’ll tuck into a pack of chorizo like it’s a packet of sweets. Sometimes I love food and I’m a machine and I’ll eat loads, and other times I’ll forget that my appetite’s not there and order a giant burger and then just sit there and look at it. I get a lot of comments about the way that I eat, that I’m spending too much money on food, or that I’m always eating and my diet must be unhealthy for me, but one coping method I’ve developed is that if I have a craving and there’s something that my body wants to eat, then that’s good, because eating something is better than eating nothing and I will eat whatever my body wants. If that means spending lots of money on food then that is an expense I have allowed myself and will never feel guilty about spending too much money on food.

This also means that I don’t eat much fruit or veg, which I know in the long run is not good for my health, but if I do eat a vegetable heavy meal then when I go to the loo it feels like my entire insides come out of me in liquid form, so I think I’m better off sacrificing veggies for the time being. I make sure I take vitamin supplements, but my body probably is still lacking in a lot of vitamins. 

I know that my body is really tough and it is able to handle having very little food inside of me. I hit rock bottom health wise when I was first diagnosed with Crohn’s and my ankles swelled up, eyeballs turned red and I barely had the energy to crawl up the stairs. My body hasn’t returned to that point since and thankfully my Crohn’s is not affecting my career. If you’d asked me as a little girl what I wanted to be when I grow up I would’ve said either a princess or an actor and it makes me really happy to say I’ve achieved both of those things already.

I’m someone who likes to have multiple jobs on the go at once, my main job currently being an actor at an immersive experience in central London, which requires a lot of energy. I technically have 4 jobs at the moment, which is insane and would be tiring for anyone to do, let alone someone with Crohn’s – I’m also aware that this is probably too much and probably is having a negative impact on my health, but I would never give it up because I’m stubborn and want to climb the career ladder and be really successful one day.

On top of being super busy with work, my appetite has been really bad recently and I’m trying really hard not to give up eating large amounts of food, but it’s really tricky. I was doing well at putting on weight, but I let it slip for a few days and it went straight back down again. I am someone who likes to wear a lot of makeup and I like to always feel I’m looking my best and in control of my appearance, but the loss of control over my appearance with weight loss does make me unhappy. I don’t feel ownership of my body and I don’t feel proud of my body – I want to be able to go to the gym and feel good about myself, not feel good about myself because I ate a triple cheeseburger. This causes me to stress about eating and feel I have to eat as much as I can, but then I lose my appetite if I’m stressed, and it’s all a vicious circle.

One thing I do really miss from pre-Crohn’s is being a fit and healthy dancer and going for runs. I feel myself losing too much weight when I exercise so personally I felt the need to cut it out of my life. This is definitely due to my own fear and a way to feel that I have slightly more control of my body. I tried running and it did make me lose a lot of weight really quickly so I felt I had to stop. I’m still very active at work and do an average of 15-20 thousand steps a day, but I used to be a really strong ballerina growing up. I love to dance and I think there is a hole that needs to be filled inside of me where I’m no longer able to express myself in that way. This is another reason why I’d really like to put weight back on, so that I can feel healthy enough to burn calories and exercise again.

Reasons I don’t like to tell people I’m struggling with eating

There’s a difference between not eating because of loss of appetite and having an eating disorder. This difference is confused by a lot of people. I think this is because long term appetite loss is not particularly recognised as an issue. This also means it’s very difficult to seek medical help and there isn’t much advice available online. In fact if you search long term appetite loss on the internet it takes you straight to websites for eating disorders. 

When I returned to university after my diagnosis with Crohn’s I was stressed to go food shopping because I’d feel nauseous and sometimes would start gagging just hearing people talk about food. I tried contacting my university for therapy for this, however, they sent me information about eating disorders. I read the whole of the website they sent me and I couldn’t find anything that matched what I was experiencing, also it said on there that if you have an illness like mine that’s causing you issues with eating then it doesn’t count as an eating disorder. This is the only time I’ve ever asked about therapy before and it only brought me more confusion.

When I’m really stressed I still struggle to buy food from shops, this last happened a couple of weeks ago. I went into Sainsbury’s before work to buy myself breakfast and lunch for later on. The shop had a really strong smell because they had a bakery section, and I had no appetite at the time and just couldn’t bring myself to buy any food. Everything I looked at made me feel nauseous and I had to run out of the shop with my hand over my mouth and trying to disguise the fact I was starting to retch. I went into work with no food, but luckily somebody had put some communal sausage rolls in the fridge and I managed to eat a couple later that day.

I never tell people around me when I experience things like this because I feel silly and embarrassed. I feel embarrassed by the fact that I got stressed in the first place - In general I’m quite a relaxed person, but I feel a lot more stressed when eating is added into the mix. 

I don’t think it’s my place to discuss my issues about eating or weight loss with other people. I’m not sure if anybody is ever really happy about the way that they look, no matter what shape or size they are, so I guess I don’t feel it’s right to talk about my own issues, when I’m not sure what issues the people I’m talking to might have themselves. 

I’ve had people try to talk to me about the way I eat in rooms where other people were present, and this makes me very uncomfortable. I think it’s a generational thing, people my own age seem to be a lot more sensitive about these discussions than people of older generations. When people comment it’s always with good intentions (either people are concerned I have an eating disorder, or they find it amusing how I eat so much and am still so small). These comments don’t upset me, and I just tell people that I have Crohn’s, but I think if people genuinely have concerns they should talk to me in private, because you never know what other people in the room are going through. In communal eating spaces, it’s important for people to feel comfortable and free of judgement. I think it’s fine to ask people what they’re eating and tell them it looks tasty, but there should never be comments on people’s diets or eating habits. 

One thing that’s weird is when strangers offer me food, but don’t offer it to anyone else in the room. It happens surprisingly often. I remember once when I was on a pub shift, a customer had bought a packet of salt and vinegar crisps and she stayed by the bar and kept saying to me, “go on, have a couple”, and, “go on, have a few more”. I found it quite funny to be honest, she wasn’t offering them out to any other staff and I can just imagine her as she was leaving saying to her friend, “oh my goodness that girl was way too thin”, as if those crisps she had given me were going to magically help me put on weight.

Romance wise, I feel insecure about the weight loss because of the lack of ownership and control over my body. I tell boys that I have Crohn’s and that it has caused weight loss, and they have always reacted well. I think my weight has been so up and down over the past 4 years due to illness and medications that I’m not sure which size is truly me anymore. I’m hoping this will settle in the future and I will feel more myself again one day. Meanwhile, for the time being I’ll keep chomping on jelly babies and following my dreams.