I’m going to try really hard not to make this a rant but, be warned, for reasons I am bizarrely unsure of, I am in full Grinch mode this Christmas. It’s either due to the medical treatment I’m currently undergoing, or an unexpected lack of Ice Hockey…
If you have invited a chronically ill person to your celebrations this Christmas, here are a few pointers to help them avoid experiencing a full on ‘jingle hell’.
1. Try to be accommodating (especially with food…)
We know full well that we are right royal pains in the butt when it comes to feeding time; that’s why so many of us bring our own food to dinner parties. However, the assumption that we will always just ‘take care of ourselves’ at what is often the biggest family meal of the year can make us feel like the irritating nuisance that everybody else has to tolerate. When there’s nothing on the dinner table that we can eat, except for the prescription food we walked in with, it immediately makes us feel as though we were never really supposed to be there.
Most of us (not all, I admit) are not asking to be presented with a feast of raw/vegan/gluten-free dishes; but what we would like is, for example, some of the potatoes to not be roasted in goose fat. And please try to avoid placing the person with Crohn’s, IBS or a similar condition at an awkward position at the dinner table – having to struggle to reach the exit in case of an emergency will do them no favours.
2. Be understanding when we run out of ‘spoons’
Remember that our faulty batteries need to be charged a lot more when dealing with constant socialising. You may not view spending time with family as actual socialising (like going to a bar or a wedding), but for the chronically ill body, it is no less draining. The analogy I like to use is that of a mobile phone that can’t go into ‘aeroplane mode’. When we are a guest in someone else’s home it means we are expected to be switched on – we’re expected to engage in conversations, be present when others are also and maintain a polite level of occupation. Essentially, all of our ‘apps’ are being continually refreshed without the device being plugged into the wall, speeding up the energy depletion even when the phone is not in use.
To a non-disabled person, sitting around making small talk may sound like the very least we could do, but not all exertion is experienced equally. Without a change in brain chemistry (like the release of serotonin) the simple acts of sitting upright and chatting can physically feel no different to mopping a floor or hauling out the rubbish. We’re not being rude or lazy when we say we need down time, we’re just trying to avoid a debilitating flare.
3. Realise that we are applying ourselves
Please acknowledge the effort, particularly if someone has travelled a fair distance to see you. This may sound somewhat harsh, and it is only my opinion which is solely based upon past experiences, but if you have no intention of accommodating a chronically ill guest, then simply don’t invite them. Christmas is stressful enough for those that are well, but for the subset of humanity who are at war with our own bodies, the entire season can feel like the prelude to an unfortunate medical episode. I myself am currently trying to quell the underlying fear that being away from my specially formulated mattress for a few days will lead to me begging my Osteopath to cut his Christmas break short in order to put my spine back in place.
Many of us do have alternative options when it comes to who we’ll be sharing the tinsel with (like having some downtime with a spouse, for instance…), so don’t feel obligated to beckon us to the festive table from half way across the country. Packing our luggage to the brim for every imaginable contingency can feel like a boatload of unnecessary stress if we are made to feel unwelcome at our destination. And we all know where stress leads us…
On reflection, this probably sounded more like a whine than a rant; but I’ve been in situations where I’ve followed the lead of people who wanted me to keep up when I was clearly unable to, and the resulting medical consequences were mine alone to bear. Those whose idea of fun is a set of organised, rigid unwavering traditions will always be poor hosts for anyone who, through no fault of their own, has to literally live minute by minute. If you can’t adapt, don’t invite – if you do invite, be sure to adapt.
Good Yule, everyone!