“Let’s go out and grab something to eat!”
A phrase that fills so many of with a sense of giddy, tummy-rumblin’ joy, is a phrase that can fill the rest of us with a bubbling sense of anxious foreboding. When you have digestive issues, eating can quickly become a pain rather than a pleasure.
I’m sure it comes as no surprise to hear that those of us with digestive diseases have a complicated relationship with food. This complex relationship displays itself in a variety of different ways. We don’t just fear the pain we will most likely experience after eating; we also fear the inevitable consequences of eating (i.e., rushing to the bathroom, extended traumatic bathroom ablutions, finding a nearby bathroom… OK look, mainly all bathroom stuff, but you get the point). We hate rapidly losing weight, we hate rapidly gaining weight, we are anxious about planning our meals, we stick to tried and tested snacks because we know (or hope) they won’t ruin us. We wish we could get as excited about eating as everyone else does, but we have a novel’s worth of outside influences to think about before so much as nibbling on a piece of toast.
More recently, digestive illnesses have been linked to an existing eating disorder named avoidant-restrictive food intake disorder (ARFID). ARFID is described as presenting “where the consumption of certain foods is limited based on the food’s appearance, smell, taste, texture or a past negative experience with food.” As a result of this type of eating disorder, we are often unable to take in adequate calories and nutrition through traditional means. We end up losing weight or are unable to gain it. We may need supplements to obtain adequate nutrition.
The problem with this arises when we are unable to absorb any of this nutrition via tablets (or hamburgers) and we then require even more medical intervention. A vicious anxiety-filled cycle begins where we can feel reliant on medical professionals not only for monitoring of our care, but for assistance with something that should be one of the most natural parts of our everyday lives. It stands to reason that prior to an official diagnosis of a bowel disease or other digestive disease, doctors are often quick to diagnose an eating disorder.
In my case, four separate doctors told me I had an eating disorder, despite my continued and confused protestations that I loved food; I just couldn’t bear the incredible pain I was in after as much as one bite. I’ve always been slender, but by this point I’m sure my appearance was more striking than I recall. How I looked didn’t enter my head; imminent death did, however, so I pushed and pushed until I was finally hospitalized, and a more definitive diagnosis could be found.
For so many of us, food equals pain. So, why then would we want to ingest anything that would cause us so much discomfort?
This can lead to us eating less, eating smaller and smaller portions, or simply not eating at all. For me, when I am in extreme pain and flaring badly, I often find myself falling into that dangerous pattern. I’ll feel nauseous and exhausted, I’ll have mild trauma from my last bad experience with food and I’ll subsequently eat and drink only the absolute minimum to allow me to function. (Yes, I know this is unhealthy and I absolutely do not advise it; but I’m also sure many of my fellow bowel-based patients have similar experiences).
The problem is, so much of life revolves around food and drink. Our social lives are generally centered around eating and drinking as meeting points or starting places for a night out. Social events like weddings and birthday parties will always involve food and most definitely alcohol. We can’t simply hide ourselves away forever for fear of being handed an hors d’oeuvre.
Naturally, issues with food and around the amount we eat can lead to body image issues. Again, another reason why medical professionals may seek an initial eating disorder diagnosis. Our weight can fluctuate so often and so quickly that it can be hard to maintain any level of self-esteem. Of course, medication and treatment play a part in this, so it is generally an unavoidable problem. I’ve seen myself looking in the mirror and being pleased to be able to see my ribs. Losing weight is heading in the right direction, isn’t it? At least, that’s what all the magazines and online influencers tell me! Now, pass me another aloe vera smoothie, I want a clear view of my internal organs!
Of course, I don’t believe that skinny equals good, but I once did. And I probably will again at some point in my life, much to my own internal voice screaming the opposite at me. It can be hard to understand when you look at this situation as an outsider but if you’ve ever been on steroids and gained hamster cheeks virtually overnight, you understand why our view on our own appearance can be somewhat skewed. Nowadays, I’m pleased if and when I put weight on, which is a much healthier place to be, but I still struggle with the fear of losing it all the minute I flare. Weight with chronic illness can be like winning the lottery but constantly having a thief waiting around every corner ready to snatch it away from you. Often, I’m too unwell to eat, I can’t keep food down, I’m too afraid of the consequences or I’m in too much pain to physically consume food, so when I manage to put weight on, it feels like an achievement. Food will always be a sticking point for those of us with digestive issues. We’ve had and will undoubtedly continue to have negative experiences linked to eating and drinking, so seeking help when we need it is always important. Eating disorders of all kinds require outside help; patients require help in learning new habits and methods in which to eat without fear. They require physiological help in understanding why we have adapted these behaviors and learn ways in which to control them so as to allow us to live full and healthy lives.
Life with chronic illness can be utterly exhausting and overwhelming, and sometimes we don’t feel we have the energy to change our behaviors, but for me, standing still in how I manage my disease might as well be going backward – I want to challenge myself to be the best “patient” I can be, to be engaged in my own recovery and establish how I can overcome my fears, be they eating a popcorn kernel or bungee jumping. I want 80-year-old me to know 35-year-old me pushed herself to live her life beyond her fear. I want to dance while I’m healthy enough and well enough to hear the tune; I don’t want food to be my nemesis. Living in fear is no life at all and I’m not going to let a croissant beat me. What an embarrassing gravestone that would be, for starters…