I contributed the article below to the Patient Access App, so you may have seen it already. If not, I'm hoping that this article might be useful for New Year - and beyond. I was writing about the impact of chronic illnesses on celebrating special occasions.
Chronic conditions at Christmas and Beyond...
It’s that time of year when we’ll all be ‘Simply having a wonderful Christmas time’ as the song says, isn’t it? Spending time with loved ones, presents and silly games, lots of tasty food and drink, as well as late nights and lazy lie-ins. What’s not to like? Right?
If you’re someone who lives with a chronic illness or condition you may feel very differently about the festivities, and that’s really understandable. I’m a counsellor working with people affected by chronic conditions and I often hear about the things they will struggle with on a daily basis. I also make no secret of the fact that I live with chronic health issues too, so I understand how hard it can be. In this article, I’m going to encourage you to give some thought now that will hopefully help you manage the festive season so that you can enjoy it more too.
There are lots of illnesses and conditions which fall under the umbrella term of ‘Chronic health’. This includes things such as chronic fatigue syndrome, fibromyalgia and lupus. They can cause a wide range of symptoms including pain, ‘brain fog’ and over-whelming fatigue.
Chronic conditions can lead others to assume that it’s easier to live with than an acute condition, which obviously needs to be urgently addressed. However, as chronic means long-term that alone makes it incredibly wearing. Imagine waking up every day, day in, day out, as exhausted as you felt the night before. Dealing with the side-effects of a medication for months on end. Or never feeling pain free, just ranges of intensity. It can mean that planning what to do that day or week is really hard because you can’t always predict how you will feel at a certain day or time. And again, that happens over and over.
I want to consider how someone with a chronic illness might struggle with any 'big event' both in the lead up and on the day. You might recognise yourself in some of these;
Overwhelming panic and stress can cause a flare up of symptoms – we may experience more pain for example. We may lose any good feelings or excitement about the days to come but have an endless and anxiety provoking to do list that may even keep us awake at night.
We may find that the jobs that need to be done take more out of us than those who don’t have chronic health issues. We may find it hard to relax or pace ourselves and stay up later trying to get everything done. And of course, having less sleep doesn’t help at all.
On the actual day/s we may have really high expectations of how we want the day to go.
This can affect us in different ways;
We may crash and burn – so we start off on a high of excitement which pushes us through the day at full pelt. But sadly, after this peak activity we will crash and burn out the next day, which can make us extremely fatigued, in lots of pain, and feeling very low.
Or we might begin the day by feeling so anxious about the day, we feel really stressed, we are overthinking all the worst case scenarios which could possibly happen later and that stops us from really enjoying the special day anyway.
Socialising can be tiring, especially if we are meeting up with people we don’t see very often. We might have to tolerate lots of ‘oh you look so well’ type comments, in which we are we smiling politely whilst feeling very mixed inside. It’s very difficult to keep that mask firmly in position sometimes.
We may be sleeping at different times, getting too much sleep or not enough. We may well be eating differently and out of our ‘normal’ routine. All of this can affect us physically and mentally. We might have a few more beers or wines than normal to help us be in the party mood, but end up feeling low afterwards. Or we’re pressured into eating too much, or too rich food, that can have all kinds of impact.
We might worry that we are letting people down/making a fuss or being a party pooper, especially if we can’t perform well enough.
I think this year, there may be additional pressures on us all at Christmas – we may feel that we need to create the ‘Perfect Christmas’ with extra special celebrations to make up for the one we had, or didn’t have, last year. It’s really important to remember that Christmas really doesn’t have to be perfect – it can be ‘good enough’. It’s also not down to one person to create the experience – it really is okay to ask for help and delegate.
Although the Big Day has passed, you might be feeling in a similar way about New Year's Eve. I’d encourage you to plan ahead – have a really good think about what you’d like to do. Then go through that list again, and take off anything that isn’t essential or realistic for you. Try and think how doing that thing could impact on you. What’s most stressful? Or takes most energy? (If you haven’t seen it before, look up the spoon theory, as I know that can be helpful.) https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1 .
Remember to think about what you consider important to help you have a good day – it might be watching Call the Midwife, or a nice stroll on Boxing Day – plan those moments of joy too.
If there are things that you feel are essential, have a good think about who you can delegate to do that task.
Make sure you actually plan/block in some down time –just for you – and take it.
Improve or develop that compassionate mind – be kind to yourself and accepting of your limitations.
Pace yourself – you may think you can do everything from dawn to dusk for all of the Twelve Day of Christmas, but actually try and change your mindset so you can pause. Taking some breaks along the way and paying attention to your mind and body, will really help you reach the end of each day in a better physical and mental state.
It’s okay to cheat. Years ago, as an aspiring Domestic Goddess, throughout the year, I would make fruit crumbles or pies, and then make mince pies at Christmas. They were all well received; they required more time and energy, which I had a lot more of in those days. Nowadays I buy the crumble topping to put on the fruit I’ve prepped, and I buy mince pies. (This also calls for a taste test or two before deciding which ones to buy which is great). And guess what? It’s still well received – family and friends are still enjoying nice food and drink in a welcoming home.
Remember it’s okay to think about yourself and your needs in all this, you don’t have to keep everyone happy or fit in with everything.
And here’s a few tips if you have a loved one who struggles with these issues…
Be supportive and compassionate.
Don’t assume they’re okay just because they look okay.
Don’t wait to be asked – offer some help. They may well find it hard to ask for help.
Try not to get frustrated/fed up/take it personally if they cancel plans.
If you are wondering whether you have a chronic illness or condition, the GP could be a good place to start. But conditions can be tricky to diagnose. You might need blood tests or other assessments. If you get a diagnosis from the GP, or have a sense of what condition you might have, there are lots of charities and online resources available that can help. These often offer online or face to face support groups which can be really helpful too. This might help you to find out about some useful strategies or tools.
Understandably our mental health can be affected by our physical health so sometimes people need support with this. Again the GP may be able to help – perhaps in prescribing medication – and support groups can be invaluable too.
Depending on how your mental health is being impacted you might want to seek support from a therapist/s. The support you need varies for everyone. You might look at physical activity, massage or counselling. As a counsellor myself when I start working with someone – we’ll look at typical day/week, come up with a well-being plan, teach tools and signpost to other resources. There’s lots of useful techniques and resources that we explore together and come up with some helpful goals to work towards.
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