Coeliac ‘sufferer’ – What’s in a word?
The word sufferer is something I see and hear time and time again in discussions online, in the media and in person to describe people with coeliac disease (of which I am one).
This word makes me bristle every single time I hear it. And the one and only time I have seen it used in the same sentence as my name, my blood pressure soared.
Why do I feel this way about a word? It’s just a word, right? And it’s used in the right context isn’t it?
Well no actually, it’s not. At least, not in my case.
You see I am not, never have been and never will be a coeliac sufferer. I live with my coeliac disease. And quite happily, as it goes.
I have no doubt that there are some people who struggle to come to terms with their diagnosis and adhering to a strict gluten-free diet. But for me, life is so much better now than during the hell I went through prior to my diagnosis. I now have the bounce back in my step, the twinkle back in my eyes and I no longer dread the thought of having to eat because of the pain it caused, which for a foodie is just *massive*.
So for anyone reading this who is struggling with their diagnosis or feels that they actually do suffer with coeliac disease, then here’s my advice, which I hope may help you…
- Don’t focus on the things you used to enjoy eating that you no longer can. It’s tantamount to sticking pins in your eyes. And that hurts.
- Do explore all the things you can still eat (unprocessed meats, fish, fruit, vegetables, rice, pulses etc. are all naturally gluten-free)and be buoyed by the growth of the free-from market (check out the number of gluten-free products in this year’s Free From Food Awardsas an example!)
- Don’t feel that you are alone and/or that nobody understands what it feels like to hear “no sorry, you can’t eat that” (lots of us so do!)
- Do consider joining Coeliac UKfor support – there are lots of local groups, too – and information – including the Food and Drink Directory (online, paper copy and mobile app versions are all available.) And do connect with other coeliacs via social media and great gluten-free hubs like The Gluten-Free Centre.
- Don’t sit in silence when you are met with a blank stare or are treated as a faddy eater when eating out.
- Do take it as an opportunity to explain to the cafe/restaurant that there’s a huge market for gluten-free food and that people with coeliac disease who have a good eating out experience, will sing and shout from the rooftops about it! It is up to us to educate the catering professional that fruit is not a pudding!
I have done all of these things and they’ve made a huge difference to my life. Yes I do still have my moments (usually when yet another loaf of shop-bought bread busts apart in my hands or the waitress at the restaurant delivers the news that I can’t eat the chips) but by and large I bimble along quite cheerfully on a day-to-day basis.
Being negative about my condition or letting it bring me down just doesn’t make sense to me because it won’t change the fact that to be healthy and well I have to keep gluten out of my diet.
I prefer to focus on the fact that my pre-diagnosis pain, weight-loss and need to sleep at random hours of the day is all behind me and that I’m now able to crack on with life once again. More of a can-doer than a sufferer, I’d say.
And of course there are times like this to look forward to…
Just don’t tell my husband 😉
Vicky at Most Marvellous Baking
My approach to gluten-free baking has always been about creating food that is as close to those old favourites as I can achieve and about baking food that is safe for coeliacs but that everyone loves to eat. I am driven by a desire for inclusive eating and a belief that food without gluten doesn’t have to be disappointing and only eaten by those who have no choice.