Listen to me!! Hear me! (How having HFI can make you feel)

This is a relatively short post (Do I hear a sigh of relief?). 

Last year I was asked to think about what a poster would look like, if I was trying to explain how having HFI has made me feel over the years. 

The poster was designed for the "Living Well" movement run by Metabolic Support. I provided stories about how I have felt at different times, and the magic of creating the poster was done by Metabolic Support. It summed up so well, years of feeling bad about myself and my diet.

Up until I was finally diagnosed with HFI, at age 25, I never felt taken seriously regarding my unusual (to others) choice of diet. Friends would assume it was an allergy. I'm a bit of a pedant when it comes to medical terminology, so would never describe HFI as an allergy- something it isn't. However, sometimes it was the only way to get people to take it seriously. There was an assumption that I was just being finicky with food or merely didn't like the taste of something sweet. 

It was a GP who commented "There's always one..." in response to my asking to have polio drops put directly on my tongue and not given on a sugar lump, as was commonplace at the time. I felt like I was just being humoured. 

After referral to a gastroenterologist for diagnosis, I was actually told "Fructosaemia is so rare, of course you don't have it. But as you're a nurse we'll bring you in to do a fructose tolerance test to prove that you don't have it."  At the time I'd only read about it possibly being fructosaemia, before the correct term HFI was used. I felt as though I was making a fuss about nothing, and certainly didn't feel believed. Before diagnosis, my liver was showing signs of damage (one of the problems of an unsafe diet). The gastroenterologist asked "So, how much do you drink?". I replied, honestly, "Maybe half a can of cold lager on a hot summer's day". His reply was "So how much do you really drink?". He refused to believe that my damaged liver was due to fructose and was sure it was due to alcohol excess. 

It also always felt (and to a large degree still feels) as though I 'should' be eating a 'normal, healthy' diet. Unfortunately, the 'normal, healthy' diet is completely unsafe for me. The '5 portions of fruit and veg per day' advice, or the well meaning encouragement for people to eat a vegetarian or vegan diet bears no resemblance to what is a safe diet for me. I have tried periods of time eating a vegetarian diet (before having an HFI diagnosis), and ended up felling ill most of the time. It's only with the knowledge that I have now, of what constitutes a safe HFI diet, that I realise how dangerous the standard healthy diet advice is for me. Yet for most of my life I have felt guilty for not eating fruit and veg. Someone with HFI should have no more than 2gms of fructose per day. Think about that. A single satsuma generally contains 3gms - more than my total limit - or indeed less than a quarter of an apple. Way less, in fact!! I have been really poorly after trying just a couple of bites of an apple! 

I think I mentioned in my first blog, the incident where my brother bought me a peach. I'll tell it again, as it's relevant to the poster. We were having a day trip. A lovely sunny summer's day in Ilfracombe. Passing a fruit stall, my brother and sister in law decided they'd buy some peaches. They smelt utterly delicious! I asked if I could have one. I had never tried one before. Knowing my dislike of fruit, my brother said "If I buy you one, you have to eat it." I agreed, of course. It seemed irresistible. However, as I sat in the back of the car, starting to eat said peach, I soon started to feel really sick. My brother commented that it was taking me a long time to eat. Not wanting to say that I didn't want any more, and feeling that I should eat it, I nibbled away a tiny bit at a time until..... stop the car... I had to get out to be sick.

The poster summed up these experiences so well! I am grateful to Metabolic Support for depicting what it can be like living with HFI.

I often feel bad making a fuss about HFI. After all, of all the inherited disorders to have, HFI must be the best! We can and do live well with the disorder. But to live well, we need the understanding and support of others. We need foods to be labelled so that we can eat safely. We need educational establishments and workplaces to understand that our dietary needs are crucial if we are to stay safe. 

We do not need to be judged. All we ask is access to a safe diet. Keeping ourselves safe is not easy. 

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