Picture the scene: I was happily perusing the free-from aisle in Sainsbury’s when I couldn’t help but overhear a conversation with the couple next to me. ‘I don’t care if the coeliacs test comes back positive, I’m not eating this rubbish bread’ the man exclaimed. His wife rolled her eyes and, as a coeliac herself, replied he’d have to! Yet still this man rambled on that nothing would make him give up the regular bread he loved so much…
Of course, I have no way of knowing if free-from bread-hating man would ever be diagnosed as coeliac (good luck mate; bread’s the least of it!) so I can’t blame him for his concern. Going gluten free is really overwhelming. Yet, it struck me as ironic that I, myself- who does not have coeliacs but definitely gluten intolerance- would never even consider risking going over to the gluten side, however much I miss crusty baguettes (and donuts… and croissants. you get the picture…) And I don’t mean this to sound pretentious or worthy because when I thought about it, I actually realised this wasn’t actually a good thing: it was because If I did somehow find myself my gorging on a french stick, I would blame myself- not only for messing up but for not doing enough to keep myself well with Crohn’s disease.
I don’t think it’s right but I am going to admit on my little blogging space that I blame myself for a lot of things. If a child I teach doesn’t do as well as they could in a test, I wonder if I should have explained it better. If my blog post doesn’t get many readers, I wonder if my writing’s rubbish. If I feel that classic Crohn’s stomach ache, I mentally wrack my brains and wonder if there’s anything I’ve done to cause it: did I forget to supplement? Did I eat unhealthily? did I let myself get too stressed by my to-do list? In other words, I try to find ways that it’s my fault.
If you have a chronic condition, you probably find this notion quite offensive; especially crohn’s where the idea of diet playing a part is controversial. Indeed, if I was talking about somebody else, I would never in a million years use the ‘b’ word. Because let’s face it- we know that we can do all the right things in the world and our bodies won’t cooperate ( and we can also have one or two cheeky proseccos and feel great the next day!) The last thing we need as spoonies is to make ourselves feel bad- we have enough people to do that for us! Yet, I am sure that there are many people like me that sadly blame themselves too. That read the headlines of miracle cures and super diet and asks themselves: am I not doing enough?
And to those people, I know exactly what you are going through. I wish this blog post was a guide on how to not feel like this but it would be hypocritical to provide answers when I’m still searching myself. I can also repeat what we already know- diet doesn’t cause your condition; it’s not your fault if you are stressed; you can’t change biology- but I feel these words would be worthless in changing how we feel.
But let’s look at the other side of the coin for a second. While it’s important to learn not to blame ourselves, responsibility is another thing altogether. Unfortunately, I read daily of people that don’t want to take any responsibility for their bodies; chronic illness or no chronic illness. The coeliacs who say ‘cakes taste too good’ (yes, I have actually read this!) or the patients who refuse to listen to doctors advice. When you are the kind of person who blames themselves, it is even more frustrating to read about people who take no responsibility at all for their health. Perhaps because living with a chronic condition forces you to value it that little bit more.
Let’s be clear, with ‘responsibility’ I don’t mean following a diet or taking up yoga. But instead self-advocacy; understanding your role in managing their condition alongside a doctor. Yet, does the medical community actually encourage this? When I lived abroad I was my own biggest advocate: I had all my blood results stored on my phone, carried around my XRay photos, used a food diary to monitor my symptoms and scheduled my own infliximab appointments. Why? Because I had no choice. I was facing a language barrier and living in a condition where Crohn’s was extremely rare. I had no IBD nurse to chat to so set out figuring out my reports along the way. Now I’m back home, doctors look at me strangely when I say ‘you say there is inflammation but give me a figure here?’ and ‘how does my blood count compare to 6 months ago?’ I leave my appointments feeling informed and empowered but I have no doubt that many patients leave theirs feeling confused and unsupported. Because unless we really push for it, many doctors don’t want us to be advocates. They want us to take a leaflet and nod our head. This can lead to major anxiety for many, searching for incorrect information online, trying out faddy diets or supplements without proper research or just not understanding our bodies properly. After all , how are we supposed to try to treat our bodies, if we can’t understand them? How do we know what we’re dealing with, unless we ask questions?
The good news is this is slowly starting to change-Patient View (and it’s IBD equivalent- IBD Portal) are being trialled in some hospitals; allowing patients to access medical informal and test results at home. More of and more of us are using the internet to spread awareness and knowledge about health conditions. And that’s what I hope to do with my little space online. It might take a while for me to truly accept that while I have a responsibility to help my body do the best it can while living with IBD, I’m not responsible for how it chooses to behave: that’s biochemistry. But what I’d also like to do is to help people become more aware of their bodies and become self-advocates too. So many of you sent me message of thanks for my article on dairy consumption and its link to digestive diseases- I hope to write more articles like this that aim to hopefully give you the knowledge so you can then decide what’s right for you and feel like you have a little more control of your situation.
I know I am not a doctor or an expert. In fact, the only person I can really speak for here is myself. But I’d like to think that my years of being my own advocate means I know my body pretty well and hope I can use this to help you manage life better living with a chronic disease.And if you need to know the best way to store an X-Ray of you colon in your handbag without it getting creased, then I’m definitely your girl.