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Ahh Christmas. They sing songs about you, the shops prepare for your arrival months in advance, children’s eyes light up as you approach, but for me, this year, you feel like the ultimate big boss at the end of a game. The final challenge of the year, possibly the biggest one yet. You feel like everything I have been trying to escape from. Noise, flashing lights, crowds, sugary foods, itchy jumpers…

The last few years, since being diagnosed with a chronic illness, I’ve really struggled with big events and social gatherings. A huge part of my chronic illness is having crippling fatigue. I get overwhelmed and overstimulated at the slightest thing now. I have to control my environment and limit what I do so carefully, otherwise it puts me into a flare up or makes me have a complete meltdown (yey, doesn’t that sound fun…).

How Christmas can be overwhelming…

But Christmas is such a joyful time of the year, I hear you say! However, Christmas has so many elements to it that could pose as a challenge for us chronically ill folk. I’ve listed a few below, but of course we each have our own struggles and to different degrees. I’ve also tried to come up with a few possible solutions, or at least ways to ease the burden.

What are some of your tips and tricks for when you feel overstimulated over the festive period?

My main ones are as follows:

Large social gatherings- which means many people each with their own needs. If you are like me, I find it hard to put boundaries in place and usually go with what other people want, so as not to ‘cause a fuss’, but it usually ends up with me not looking after myself…leading to a flare up. One social gathering could put me out of action for weeks.
Possible solution: Could you designate a ‘quiet area’ in your home or ask whoever is hosting if there is an area you could go lay down if it all gets a bit much?
Noise- more people means more conversations going on. Multiple conversations happening at once really hurts my brain. In fact, talking in general really tires me out as it flares up the arthritis in my ribs. Even more so if Christmas music is blaring out over the top of it all.
Possible solution: Could you wear those ear protection buds, like loop ears, to minimise the noise? I like to sit on the ends of tables so I can make a quick exit if I need to. I take multiple trips to the loo just so I can zone out and take a few deep breaths. Could you have a secret signal with your partner to ‘take over’ the conversation, or to leave, if you feel yourself getting overwhelmed?
Germs- a lot of people all in one place also means germs. Especially around this time of year with flu, norovirus and covid running rampant. If you have a compromised immune system, this could spell disaster.
Possible solution: It could mean asking people to wash hands, mask up, or to warn you if they have a cold etc. This can be incredibly tricky, especially when wearing a mask is seen as a political act these days, with bans in place in areas of the US. Could you get a HEPA air filter for your home? And/or put hand sanitizer by the front door as guests come in?
Washing up and tidying the house- Getting your home ready for guests can be really energy zapping. I usually spread out the cleaning of my flat over several days. I can’t clean the whole flat in one go without getting extremely fatigued. So if you are hosting or people are coming to you for Christmas, it could mean getting the house clean and tidy, setting up beds, putting out extra towels for guests, more washing up/laundry to do.
Possible solution: Could you spread the tasks out over several days/weeks so as to not tire yourself out? It could mean asking for help, or asking if someone else doesn’t mind hosting this year. Or it could simply mean telling people to deal with your messy house. ‘Like it or lump it’ as they say!
Cooking- Argh even the thought of cooking this year fills my body with dread, but thankfully I only have to cook for 3 this year and my husband is getting his pinny (apron) on to help out. I find its not just the actual cooking that’s tiring, it’s the mental load of meal planning, making lists, food shopping, timings of when to put everything in the oven.
Possible solution: I have bought a stool to sit on whilst cooking now, as standing in one spot really hurts my lower back. Is there any other special equipment that could ease the load? I also try and prep as much as possible beforehand- chop/peel/freeze stuff, so it’s not as daunting on the day. Or buy pre-prepared food e.g. I’m buying frozen roast potatoes that I can just shove in the oven, as peeling can be sore on my hands. I also make lots of lists for timings and set multiple alarms on my phone so I don’t forget to do something- brain fog is a bitch! Of course there is always the option to go out to eat, we did that last year at a local pub, but it usually costs a small fortune at Christmas, which hasn’t been an option this year. If you are hosting, could guests each bring a dish of something to lessen the load (and cost) on you?
Food- If you are anything like me, a lot of foods are my nemesis. Since having this chronic illness, things like caffeine, alcohol, sugar, dairy, gluten and even certain fruits and vegetables, can cause me inflammation which leads to a flare up or a very sore IBS belly. Who wants to spend Christmas on the loo? Not me!
Possible solution: So it may mean bringing your own alternatives to gatherings. Perhaps eating beforehand and only eating select nibbles. Could you discuss with the host your diet requirements and offer alternative ideas for them? If that all sounds daunting and a way of pissing everyone off (why do people get so offended when you have different food requirements?), it could even mean skipping the main event and telling people you will come over for just ‘drinks’ afterwards.
Travel- If you are going to someone else’s for Christmas, it could mean travelling. For me, sitting in the car for long periods of time is very painful due to the arthritis in my back/hips.
Possible solutions: It may mean planning in extra stops or making sure you bring with you a ‘survival pack’ e.g. pain killers, heating pads etc. If you are travelling by public transport, this could be stressful due to cancellations, crowds, exposure to germs etc. Is there a way of breaking down the journey into more manageable chunks? Do you have a plan B in case there are delays or cancellations? I also don’t like staying over at other peoples homes anymore. It’s nothing personal, but I just can’t sleep on sofa beds or couches with the state of my spine these days. One bad sleep could cause weeks of a flare up. I often have to get up multiple times in the night to stretch and I feel I would disturb people if I did that. So now, the husband and I either stay at a nearby hotel, our campervan (we have a super comfy bed in there with a special mattress), or we just leave the party early and go home (I know, party poopers, but needs must!).
Buying presents- I haven’t been able to work the last 2 years since having this chronic illness. Money can get pretty tight, which means buying presents for everyone can be tricky. I hate traipsing around the busy shops at Christmas time too- even 5 minutes of that could cause me to flare up.
Possible solutions: So this year I have bought only from local shops and independent businesses that are in a few minutes walking distance from my house. I mostly bought from my village charity shops, which helps my own purse strings, helps the local community and gives money to charity, win win! There is also the option of buying online, gift card options which you can get from supermarkets, OR you could ask if people are willing to do secret Santa, so you only need to buy one present instead of many. If you are a crafty person (as in Arts & crafts) or like to bake, could you make your own prezzies?
I’ve also listed some amazing gift ideas at the end of the blog- gifts that would either be great for people with a chronic illness or help support fellow Substackers!
Please feel free to add your own recommendations in the comments too if you have a book, artwork or Substack subscription etc you think people would enjoy :)

Christmas can bring mental and emotional stress…

If none of these solutions even seem remotely possible, it may mean having to completely change what Christmas looks like to you and your family from now on. This can be upsetting. It may mean saying goodbye to old ways of doing things. It may mean putting strong boundaries in place, which may mean potentially upsetting a few people.

Christmas has such strong traditions attached to it, people have such fixed ideas in their head about what it should be, that it can be very hard for people (like those with chronic illnesses) to ‘rock the boat’ and to alter the plans trying to make it more accommodating for themselves. But you deserve to have a good time too!

And all practical stuff aside, this time of year can be really challenging for mental and emotional reasons. It could make you think more of the loved ones you have lost and are no longer here. I know I think a lot about my mum and my grandmas who have sadly passed away. It makes me think of past Christmases and how magical they used to be compared to now. I often get nostalgic and end up having a little cry at some point during the holidays (does anyone else do that, or just me?). I now light a candle on Christmas eve which gives me some quiet time to think and reflect on lost loved ones. We also have Christmas tree decorations with their names on, so it makes it feel like they are still part of the special day.

Being around extended family/friends and large groups could be overwhelming, especially if they don’t understand your illness. They could ask you questions you don’t particularly want to discuss or they may offer unsolicited advice. ‘When are you going back to work?’, ‘Do you feel better yet?’ ‘Have you tried such and such to cure it?’ etc. They could make you feel like you are being a diva for putting boundaries in place which could be incredibly draining, feeling like you have to constantly explain yourself. Which you don’t btw- you don’t owe anyone an explanation. I like what my therapist says; ‘No is a complete sentence’. Or I usually just turn the conversation back to them, people love to talk about themselves! Or just point to something shiny across the room to distract them and run away (joking…not joking).

It could be a time of year that you feel particularly lonely and isolated. You may see everyone else going off and having fun, whilst you are spending a quiet one at home, possibly in pain or having a flare up. Social media can make this worse- just remember that people only post their highlights. They don’t always show you the messy behind the scenes. For example, they may have piles of presents but don’t show you the debt it caused them. They may show you a perfect family photo, but not of the arguments that happened after a few drinks. It may mean limiting your time on social media for the time being. It may also be helpful to write a gratitude list instead, focus on what’s good in your life (trust me, there is always something, even if its something small like ‘I’m grateful for this warm cup of tea’).

Your routine may have drastically shifted and that can be uncomfortable to deal with e.g. differing eating times, sleeping patterns, the people you may rely on for support may be going away for the holidays. I know that I thrive off a good routine these days and the holidays can be a strange disrupting time where you forget what bloody day it is- especially the time between Christmas and New Years! I’m going to try and keep to a good sleep routine if nothing else, as without good sleep everything else crumbles for me.

But overall, it’s important to be kind to yourself this time of year. I know it’s easier said than done, but I’m trying to take the pressure off myself this year. If I end up having a flare up or spending most of the time wrapped up in bed due to fatigue, then that’s ok too.

I also want to start making my own traditions that work for me and my husband. I’ve started to think ‘What would a perfect Christmas look like now?’. For us that means peace, downtime, relaxation, quiet, spending time with loved ones, cosy pj’s and crackling fires. I think for future Christmases my husband and I may even go away in our VW campervan and find a quiet nook in Scotland. We could put fairy lights up inside, play Christmas movies on our projector. Or find a cosy pub and watch the snow fall outside. Ahh bliss.

How about you? What would a perfect Christmas look like to you now?

Is there anything in particular you find difficult around this time of year? Have you come up with new traditions since becoming ill? Is there any tips and tricks you want to share with us? What are you looking forward to the most? I would love to know in the comments below!

Christmas: Is it the most…stressful….time of the year?

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