The holidays can be a challenging time of the year, especially if you live with a disability. In the November newsletter, I asked you what the most helpful thing would be for us to discuss in the lead up the Christmas.
The most popular answer was: coping with the physical strain of the holidays.
My last two Christmases have been severely impacted by my physical disabilities, and prior to this, I always struggled with the added pressure of the holidays in a more subtle way. Come Christmas morning, I was frequently nursing what I can now identify as a “flare up.”
The silver lining of this is that I’ve learned a lot about how to make special occasions enjoyable, even if you aren’t feeling your best or can’t do as much as you would like. These lessons have also helped me deal with feelings of jealously and FOMO when I see other people celebrating milestones in ways that I no longer can.
I hope that sharing my process for managing a big event like Christmas can help some of you have more spoons and less symptoms these holidays!
1. Identify your triggers
What are the things about Christmas time that make it difficult or that you find off-putting?
These could be physical things like having reactions to eating Christmas foods, or getting dizzy from too much time spent walking around the shops.
They could also be emotional. Maybe Christmas time brings up feelings of sadness and isolation because you can’t celebrate the way that you want to, or because you know you’re going to have to deal with unsupportive family members.
Once you’ve identified your triggers, it’s time to think about how you can limit their impact on your holidays.
The solutions for physical triggers are often more clear cut. For example, when it comes to food, you can choose to buy yourself some ‘safe’ treats, and bring them with you to events so you are not tempted to eat things that may trigger symptoms. Similarly, you may decide to do your Christmas shopping online to avoid destroying your energy reserves.
Emotional triggers can be a little trickier to deal with. When it comes to processing feelings of sadness or isolation, often all we need to do is accept that these feelings are a part of our life, and that it’s ok to feel sad at Christmas time. It’s also a great idea to talk to a trusted friend or maybe even a mental health professional about how you’re feeling. This may feel like a lot of effort initially, but getting these feelings out in the open early can really save us a lot of long-term emotional strain over the course of the holiday period.
It’s also very important to set boundaries ahead of time, so you can limit your exposure to emotionally draining situations. For example, choosing not to look at TV or social media coverage of the holidays, or only agreeing to spend a limited amount of time with family.
2. Find your inner circle
Identifying who is in your inner circle during the holidays is important for two reasons:
No. 1 – it helps you decide how (and for who) you will prioritise your energy this Christmas (more on this later!).
No. 2 – it helps you identify who will have your back when enforcing the boundaries you set in part 1.
Personally, I prioritise my partner, parents, and about three of my closest friends during events like Christmas. If I’m able to spend time with and/or shop for other people, then that’s a great bonus, but these are the people that get first dibs on my spoons!
I choose these people because they are always there for me, and still will be after Christmas is over. I want to use the holidays as an opportunity to let them know how much they mean to me. They are also people who have invested time in understanding my life and limits, so I know that they will respect my needs during this busy time of the year.
I also know that I can talk to them about any grief or anxiety that I may feel in the lead up to Christmas events, and that they will encourage me to honour any boundaries that will make things easier for me.
We touched on this earlier, but its a good idea to talk to a friend or family member about any concerns that you may have in the lead up to the holidays. If they are more able-bodied than you, you might consider asking them to help you with some of the more physical tasks, like shopping, baking, or gift wrapping – a lot of these activities are more fun with company anyway!
You can also talk to them about any Christmas obligations that you are dreading, and ask for their support. This could come in many forms: they could accompany you to an event and make sure that you leave after a certain amount of time, they could help you deflect any inappropriate questions at the dinner table, or you might simply agree to give them a call after dinner, so that you can vent to them about your rude, ableist Aunty.
3. Pick your priorities
I think that identifying your priorities is THE number one factor in how much you can enjoy the holidays while disabled or chronically ill. It’s very easy to fill every spare moment with various holiday activities, but you don’t have to partake in all the expected Christmas traditions, nor do you have to say yes to every event!
The trouble comes when we don’t take the time to distinguish between what we actually value doing at Christmas, and what we simply feel is non-negotiable because of social conditioning.
I recommend taking the time to sit down with a pen and paper at the start of December, and writing out the things you most enjoy, and/or value about Christmas. For the past few years, I have also been dividing my priorities up into two categories: low energy and high energy. For example, making Christmas dinner would be a very high energy task that would require some planning, while writing Christmas cards is something that I can easily do in bed on a low spoons day.
Once you’ve got your list, it’s important to have a serious think about how many of these activities are actually going to be doable. I find the best thing to do is to look at the time frame you want to complete them in (do all these things need to be done over the Christmas weekend? Or can they be done slowly throughout December?) and see how your list compares to the normal level of activity you can manage in your day to day life, without triggering a flare up.
If you’re really struggling, think about whether or not you could trade in any of your regular activities for a week or two, so you can use that energy for Christmas things.
You should then try your best to eliminate anything that still doesn’t (at least roughly) line up with your sustainable baseline level of activity. This can be a sobering process for many of us who just want to make the best of our holidays, but remember you will have a much better time doing less and being well enough to enjoy it!
4. Preparation is key
Once you’ve crossed some things off your list, (I’m proud of you <3 ❤️) it’s time to create a timeline of your activities to decide how to best manage your energy.
This will be highly individualised based on your priorities, but here is an example of my timeline from Christmas 2020.
Start of December:
Order gifts online
Decide on Christmas menu
Put up decorations
Mid-December:
Hosting friends who will be away for Christmas
Attend Brussels Christmas markets
Watching Yogscast’s Jingle Jam with Haydn
Purchasing any special ingredients for Christmas dinner
Christmas Eve:
Prep ingredients for tomorrow
DIY Christmas manicure
Making eggnog
Watch Christmas movie
Christmas Day:
Skype family
Making Christmas dinner
Taking family photos
Playing Overcooked’s Christmas themed DLC
Admittedly, last year was a relatively low stress Christmas as we were still in a partial lockdown. However, you can see that I have not included that many activities, and the ones that made the cut were well spaced out. I also included a number of low energy activities like watching movies and doing my nails. These are nice way to get a little pick me up and get into the Christmas spirit even if you have little energy.
You may also wish to add your other, ongoing obligations to this list, so that you have a fuller picture of what your month will look like. This will also help you ensure that the change in routine at Christmas time doesn’t lead you to drop the ball with your regular self-maintenance. Make sure you remember to do things like re-fill your prescriptions and do your physio exercises!
Once you have your timeline, you’ll able to plan your holidays in more depth. For example, I knew that a visit to the markets would sap a lot of my energy, so I was careful to plan a rest day afterwards. You can also break big days/tasks down into smaller blocks. On Christmas day, I was careful to plan short breaks to lie down in between my activities. I also did not make dinner all in one go, I started early and took breaks.
Don’t be afraid to cut corners wherever you can! When I hosted my friends for a Christmas afternoon tea, everything was store bought and I’m not even a little ashamed to admit it! Having the energy to spend time with the people I love was ultimately a much higher priority for me than flexing my hostess skills.
The final stage of your planning should also include a few contingencies. Do you know what to do if you have an unexpected food reaction? Is your doctor still working over December if you get sick?
This is also the time to come up with a few “go-to” phrases. Be they for politely declining last minute plans that you don’t have the energy for, or for disengaging with that ableist Aunty we were talking smack about earlier.
It used to really annoy me that I had to do this (why couldn’t I just answer questions on the fly like a normal human!?). However, I have since realised that many people have not had the opportunity to learn about life with a disability and chronic illness, so it can take a lot of effort to make yourself understood. As such, there is no shame in taking control of your narrative, and actively taking time to think about what you do and don’t want to say to people. It also leaves you feeling calm, prepared, and more able to enjoy social situations without worrying about how to talk to people who may not be on your side.
Final Thoughts
As I finish up this post, my only fear is that I may have made a lot of this sound far too easy…in reality… IT. IS. HARD.
Some of us will have worsening symptoms when we break away from our routine, no matter how well we plan for it. Others may have extra responsibilities that make following some of my steps next to impossible. While I hope that these suggestions will make your holidays a little easier, the bottom line is that it is ok if Christmas is still a sad or difficult time for you.
You don’t have to get it all right on your first try either. Learning to re-connect with our bodies and understand their limits can be a very long process for people with chronic illnesses, (especially if we have been previously gaslit by doctors!) and we may have maladaptive coping mechanisms that we need to break before we can really enjoy ourselves. It can also be very hard to unlearn the social conditioning to keep up appearances and do things to the point of excess at Christmas.
In the perfect world, I would wish you all a Merry Christmas filled with love, joy and self-fulfilment, but instead what I wish, is that whoever you are, wherever you are, you have the kind of Christmas that is right for YOU.
How do you cope with the physical strain of the holiday season? Share your tips with your fellow chronic illness and disability warriors below!
Love this discussion and want to learn more? Reach out!
Fancy spreading some holiday cheer?
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