I was two-and-a-half years old when I was diagnosed with HCU, and by the age of three or four I was definitely aware of it to the extent that I knew I ate different foods compared to other people.
At that point I would have been categorizing foods in terms of “yes, I 100% know I can eat this'' and “no, I’m not really sure what that is.” I probably had ‘yes’ fields and ‘no’ fields until I was about six or seven, and if I was going to a party or something my mam would send me with biscuits she had made and stuff like that. I suppose the explanations just filled in as I got older, having it constantly explained to me. I remember doctors going through Venn diagrams with me, and thinking “yeah, we did this last time”, so it was beginning to sink in a bit. But certainly at that point I didn’t feel all that negative about it; I just got on with it.
My parents didn’t make too big a deal out of it - at least not to me - and I would never be eating something that was 100% different from what everybody else was eating. After my parents split up, we ate out quite a lot - usually about once a week - and there were certainly times where I would be in a restaurant and I literally had four different kinds of potatoes; you know, chips, roast potatoes, boiled potatoes and mashed potatoes. But I never had any negative reactions from my friends or neighbours; the area where I grew up in Dublin was kind of a housing estate where we all knew each other, and everyone’s understanding of HCU seemed to just be: “Yeah, people have things that are different.”
With my liquid protein substitutes, I try to strap them on to the end of my breakfast, lunch and dinner - and then it’s done. I keep a handful of the readymade ones in the fridge so they’re always there, and if I’m feeling peckish I just go to the fridge - so that when I’m hungry I’m reaching for one of those rather than reaching for junk food. If I go a day without the protein substitutes, when it gets to around 4 or 5 in the afternoon I can start to feel really cold and tired - and I know it’s from not having had the protein substitutes, because as soon as I take it the coldness and tiredness goes away. My general focus in terms of conversation or replying to things tends to be a lot more all over the place if I haven’t been taking them as well. It was only recently that I figured out some other side-effects; in my experience, if I haven’t been taking it for a week or so I get bad morning breath and the texture of my skin starts to get worse.
Interestingly, I’ve found my protein substitutes to be a good indicator of how long a relationship I’m in might last; I’ve known when a relationship is going to work for a while when someone is actually willing to taste my low protein drink. They get major kudos for that! It’d probably be a bit further down the track of us dating - I don’t think it would be the first time they meet me - but there’s certainly been two or three times when someone has been willing to try it, and I think “oh, that’s interesting!” And those relationships have lasted longer than ones where someone hasn’t been willing to try it. The fact that someone even suggests trying it themselves without me saying anything… that’s a pretty good sign! I’m not saying I’ve never had a relationship with anyone who hasn’t tasted it, just the ones that have tasted it happen to last a bit longer!
The times when I end up skipping my protein substitutes is usually where there’s been a lot going on in my life and I’m generally feeling quite stressed. It’s something that can start to slip quicker than a lot of other things… because it does take a degree of focus to stick to it in the first place, and if you’re feeling unmotivated or stressed depending on whatever’s going on, that can amplify the difficulty of sticking to taking the protein substitutes. Every now and again you do get fed up and have moments of “Why do I have to deal with this, and why does nobody else have to?” But for me personally, those moments are fleeting and by no means constant.
When I was younger, I always thought going travelling would be a lot harder than it actually was, simply because of having to get hold of protein substitutes wherever you’re going. Certainly now it’s less of an issue than it was 20 years ago, but even so I didn’t let it stop me going to England for three months when I was 19 to do volunteer work. It was with the Winged Fellowship Trust, helping out at a respite centre in Southport that enables adults with physical and sensory disabilities to go on holidays. At the time, my protein substitutes came as these big tins of powder, and to take enough with me for three weeks would have made up 90% of my suitcase. It would have been handy if I could have put them into small plastic bags, but going through customs with unlabelled bags of powder would be asking for trouble! My mam ended up posting it to me all through summer, but as a 19-year-old I wasn’t great at sticking with taking it. At the same time, I was living at the place I was working so I had limited access to the kitchen, but the chef there bent over backwards to cater to my low protein diet - even to the point of coming with me to the supermarket to make sure he got stuff that I could eat. That was really cool of him.
Nowadays, the internet has changed travelling for people who have HCU or something like it. If you’re going somewhere and you’ve been talking online to someone with HCU who lives there, you can consider meeting up with them - likewise, I’ve spoken to or met up with people with HCU who are visiting Ireland or the city I live in. You can have that conversation in advance and share tips about where you might be able to get good low-protein food. There’s a lot more awareness and choice around food and drink generally now, and I know that there’s a PKU travel page on Facebook that I look at sometimes, or I’ll post stuff if I’ve had a particularly positive experience somewhere.
Everyone has blips where they’re not sticking to their diet, and that’s not exclusive to people who have HCU or PKU. It’s the same as, say, in the middle of the first lockdown, when people were just sitting around in their pyjama bottoms or whatever… there was a degree, in general culture, of people finding out they’d put on a bit of weight after a few weeks of not eating or exercising the way that they normally would. If you can see it like that, where for them it’s a blip and they can just go and lose the weight, for me not sticking to my low protein diet can be a blip too, and it’s just a case of getting back on track in terms of sticking to things. Everyone has to manage what they eat to some degree, and in that sense I don’t see myself as particularly different to anyone else.
Disclaimer: The views/opinions presented are solely those of the individual and do not necessarily represent those of Nutricia.