When it feels like Christmas is cancelled...   

Christmas is a magical time of year that so many people greatly anticipate all year round. The combination of presents, great food, seeing friends and family, the songs, films and decorations as well as events that we might attend make it a wonderful time!

I love Christmas for all these reasons and many more but since becoming ill in 2014, Christmas, and the lead up to it, has become a time of mixed emotions. 

In December 2014, I had an operation that changed my life for the better but meant that I spent all of the lead up to Christmas preparing that, recovering in hospital and resting at home. When Christmas day arrived, I felt that I had missed out on a lot. Like with holidays and other events, the anticipation of the event and the preparation for it, can often be the best part so when I wasn’t able to go out and buy presents, write cards, see friends and family or help decorate, it didn’t feel the same. I told myself it was okay because I had had a life-saving operation and needed time to rest and recuperate and I would find the Christmas spirit again next year. As 2015 began and the blossom started to appear on the trees, I realised that my body was not recovering as expected. Throughout the summer, I had appointment after appointment with various doctors who tried to help me manage the new symptoms such as fatigue and pain. As the leaves fell, I spent more time asleep than I was awake and this continued to be the case as December rolled around again.

Although I had plans for Christmas that year, it was clear that once again, I would not be able to do many of those things. I was too fatigued to walk around the shops, wander around the town to see Christmas lights, or help hang the decorations. It was all made worse as I had spent all year collecting diagnoses of chronic illnesses, which meant I knew my situation would be the same next year and the year after and the year after that. 

Christmas, as I knew and loved it, was over.

As we get older, Christmas changes. This happens to everyone, not just those of us who deal with chronic illnesses and/ or disabilities. At some point, most of us stop believing in Santa and become Santa for others instead. As an adult, I know how sad this can be. I can still remember the Christmas after I found out Santa wasn’t real. I still enjoyed Christmas that year; the food, opening presents, seeing family and having lots of fun, but it felt different and I grieved the childish wonder of Christmases past. 

We know that this year, Christmas will be different for many of us, children and adults alike, due to Covid-19. We won’t be able to have the wider family all together in one house, many events will be cancelled and Christmas parties will take place on Zoom instead of in a pub. It can be hard when we are forced to stop or change our traditions and routines, especially when that means cancelling things that we look forward to, but I believe it is the right thing to do this year. I can’t say that I am happy about many of the changes that will have to happen this year, but in the same way that online church is more accessible to me than physical church, this Christmas is looking to be more accessible, inclusive and manageable. In previous years, I have missed events because the pain was too bad or because I didn’t have enough energy, but with many of these events taking place online, this year, I get to be involved. 

When the magic disappears, whether that’s because we have grown up, become unwell or as a result of Covid restrictions, we are forced to create or find the wonder in new ways.

When I found out the truth about Santa, I found new wonder in buying and giving presents, helping put up the decorations and going on walks to see the Christmas lights. When I became too unwell to do these things, I found a new joy and wonder in Christmas films, Christingle services and carol singing. 

This time of year will be hard for so many people, but that doesn’t mean we lose or have to give up the wonder of Christmas because no matter what our circumstances, the events of the first Christmas remain the same. As Christians, no matter we do in the days leading up to Christmas or on the day, we can still remember the birth of our Saviour, Jesus, who came into this world as a baby and died on the cross so we can have eternal life.

For me, Christmas day will likely involve medications, multiple naps and rest breaks and video calls instead of seeing family members face to face but that won’t stop me from celebrating the true meaning of Christmas – nothing can.  

Over the years, I have found ways that help me to manage Christmas with a chronic illness and wanted to share some tips that I hope will help you too…

Tips for dealing with Christmas as a chronically ill and/ or disabled person:

Lower Expectations (with yourself and others) – By being honest with yourself about what you can do, you can reduce disappointment by being clear about the things you can do. If you expect too much of yourself, you will be disappointed and frustrated with yourself when you find that you can’t do that thing on the day. In the same way, by sharing what you think you’ll be able to do with others beforehand, they won’t be upset if you aren’t able to join in with games or helping to wash up after dinner on the day. 

Speak Up – If you need to get up and move about, you can’t eat that thing on your plate due to allergies, or can’t join the family on the annual Boxing day walk, tell someone. It can be hard to do but will be worth it to ensure you all have a nice time. 

Pace/ Rest – Christmas day can feel like a lot. The adrenaline and excitement can lead to an increase in fatigue. I have learnt that in order to enjoy everything that Christmas day and the lead up brings, I need to plan rest breaks in my day. By pacing this way, I have found I am able to do more than I would if I had pushed myself too far doing one particular thing.

Prioritise – In order to rest, you might find you have to choose between two things that you want to do. Maybe your family have planned to open presents, have dinner, call some family members, watch a film and play games but you know that you need to rest at some point. To ensure you can do the things you want, you will need to prioritise the things you are most excited about and then sacrifice the rest to ensure you have time to rest.

Tips for supporting chronically ill and/ or disabled people over the Christmas period:

Ask – It can be very hard to ask for something. Having someone ask what you want or need can make it easier to express a need.

Listen – Your loved one might share with you some of the things they struggle with or ask for something such as a place and time to rest or allergen free food. Listen to them and work with them to make it possible for them to enjoy the events and celebration in the way best for them.

Offer Help – Christmas can be a stressful time as there can be lots of things we want to get done in a short space of time. If you have friends or family members who have a chronic illness and/or disability, offer to help them put up decorations, post their cards or letters or help them with their cooking. If they say no, that’s okay, don’t force yourself on them, but it can be really appreciated by those who feel overwhelmed.

Be Flexible – My pain and fatigue changes hour by hour, which means I sometimes have to cancel or delay an activity or event at the last minute. This can be hard to do as I probably really wanted to go and never want to let anyone down. If someone with a chronic illness or disability has to cancel at the last minute, ask if they would like you to go and be with them instead. Maybe you could watch a film or chat and arrange to reschedule plans to go elsewhere.  

Laura is the founder of "You Belong" -  an online support network and community for people who share the struggles and questions that arise from living as a christian with chronic illness and/ or disability. Laura blogs on the site, and there's also currently an advent calendar with ideas and inspiration for every day through advent

Check them out at  http://www.youbelong.org.uk/home - or on social media @YouBelong_2019 (twitter), @YouBelong_Community (Insta) or @YouBelong2019 (facebook)