Content Warning: mentions of chronic illness, food.
Disability with Charlotte Paradise.
December’s here (don’t ask me how!) and you know what that means… decorations, awkward parties and fun conversations with your family members about why you’re a vegan and “still sick” after 7 years. Just me? Here’s your festive guide to navigating the holiday season as someone who is chronically ill/disabled or as someone who knows someone who is.
Things to remember as a disabled/chronically ill person this December:
1. Take the pressure off.
Special occasions like birthdays, anniversaries and, yep, Christmas (and Chanukah!) tend to come with a lot of expectations. We can be so desperate just to not be sick on the day(s) that we have impossible expectations for our body and minds. I’m sure if you’re disabled/chronically ill that you know all too well by now that it doesn’t take a holiday. Blindly hoping that it will will only put unnecessary pressure on yourself. On that note…
2. Don’t push it.
You don’t have to be non-disabled to have a good time. How can you meet yourself where you’re at this month instead of pushing your body and/or mind past its limits? There are so many different ways you can celebrate without exhausting yourself. Think cosy (and brilliantly awful) Christmas films, festive versions of your favourite hobby (my latest old-before-her-time pastime is cross stitching…) and takeaways.
3. Try not to define your value by your social “success”.
Being disabled can be lonely. In fact, half of us disabled people are. It can feel so much worse at this time of year because it’s the perfect month for people to flaunt how social they are on social media (whether they are or not). Seeing people at a constant flow of parties and doing one festive activity after the other can make you feel even more isolated than normal. But, social media is just people’s highlight reels and its worth taking it all with a pinch of salt.
Remember, the amount of friends you have does not determine how much worth you have. Neither do the amount of social events you can make or not. At the same time…
4. Make arrangements.
If you’re feeling lonely this month, put things in the diary. Yes, sometimes the people in our lives could do a better job at being inclusive but people also just get really busy at this time of year and aren’t the best at actioning things. You could be that person for yourself. Maybe text that friend and put in a zoom call if you’re isolating or flaring or even have little festive dates with yourself.
5. Stay warm.
So, this one seems like an obvious point but the cold makes pain worse and higher pain levels makes everything harder. Hot water bottles, heated blankets, Christmas jumper over Christmas jumper, cups of tea… get them all at the ready. December and social events are demanding enough let alone when you’re cold and extra sore.
(This is a note for me because I’m always cold and always forgetting how much a hot water bottle can take the edge off my pain!).
6. Eat what you need to eat, not what you feel obliged to.
For many of us chronically ill lot, diet is an important part of managing our symptoms. So many events at this time of year revolve around food and all of the comments on what you are and aren’t eating along with it (eye roll). Gluten free, dairy free, vegan, veggie, low-histamine, inflammatory, FODMAP… whatever your (sugar-free) jam, you’re not a nuisance for asking for what you need. If a host makes you feel like that, remember that it’s their toilet you’ll be running to after dinner…
That being said, if your diet allows you to treat yourself now and again, do it and ignore anyone who wants to comment on it. I will be eating all the potato, ALL THE POTATO.
7. Resting isn’t passive, it’s actively showing up for your body.
I blame Capitalism (and my A-type personality) for this but I have a really hard time resting and feeling like I’m wasting my time if I’m “not doing anything”. But, resting around and during the holidays is intentional, which means it’s not doing nothing.
Top resting tip: I hate that it’s come to this, but I find it really helpful making my rest feel more “productive”. I’ve started putting restful things in my calendar on rest days like “listen to podcast”, “read for half an hour”, “watch TV” or even “lie with eyes closed”. Then, I can tick them off when I’ve done them and feel like I’m doing something important (which I am).
8. Give yourself permission to smile.
I know it can feel weird and sometimes wrong to smile when you’re having such a hard time, when you feel like you have no reason to. But you’re allowed to have a moment of joy even if it doesn’t feel like it aligns with the rest of your life at the moment. Having said that…
9. You’re allowed to cry too.
There can be so much pressure to be happy at this time of year (who decided that was a good idea in the middle of freezing cold and dark December?!). But you’re also allowed to be sad, frustrated, angry or lonely (even in a crowd of people). Have a good weep watching The Holiday (I will), sob over chocolate or in a bath, whatever you’ve got to do, do it.
10. Own your identity as a disabled/chronically ill person.
I’d say the biggest challenge around festive periods is seeing people you might love but not necessarily like… People might question your identity as a disabled/chronically ill person, in fact, they might just down-right gaslight you. I hate this part. I know it’s easier said than done, but I’ll be reminding myself over and over again that only I know my body and no one else has the right to deny that. If I say I’m disabled, I’m disabled. K bye.
11. Share what feels right.
Seeing people you haven’t seen in a while can mean being asked big questions like “how have you been?” and “what have you been up to?” Not the most fun questions when the answers are “in hell” and “nothing”. You don’t have to be super vulnerable, though. People earn your vulnerability and honesty and if someone doesn’t feel safe enough to talk to, don’t go there. You’re allowed to hold certain things close to your chest.
Also, even if you’re talking to someone you can trust, the setting might just not feel safe (“am I really ready to cry under the mistletoe around 20 other people?”) and that’s okay too.
12. You don’t have to spend money you don’t have.
Nearly half of everyone in poverty is either disabled or lives with a disabled person (our benefit system is shocking, which you can read more about here). There can be so much shame around not being able to buy people gifts but with sustainability on the up, recycling gifts is on the up!
13. Top up the self-love.
Christmas and Chanukah are celebrations about hope and love. How can you give that love to yourself and allow yourself to hope for year to come? Have a think about it and go, go, go.
14. Let people love on you.
Having my own access requirements and needs around my disability has made me feel infantilised at times (due to my internalised ableism). That’s meant that I’ve been quite stubborn about letting people care for me. A lesson from my therapist a few months ago: never underestimate how much joy it can bring someone to love on you. Give the stubbornness a break (at least for a month). After all, it’s the season of joy, right?
Things to remember as someone who knows a disabled/chronically ill person this December:
15. Be accommodating.
The disabled/chronically ill people around your table will have requirements. Do the simple things and cater for them whether that be specific food requirements (this isn’t as hard as you think with many shops offering free-from options), non-alcoholic drinks, places to rest or planning quiet moments into the Christmas Day schedule. A small thing can go a long way in helping a disabled person feel seen and included.
16. Be active in planning for a loved one’s flares.
Help the people in your life that might need some extra TLC and anti-fatigue spaces feel cared for by letting them know that there’s a space for them to go to if they’re not feeling so good. Ask them what they might need during a flare and make sure you have those things ready to go if needs be. Maybe even put together a little SOS care package.
17. Keep your opinions and unsolicited advice to yourself.
If you’re going to an event and there’s someone there who’s disabled/chronically ill and you have thoughts about the way they identify, keep it to yourself please and then go do some reading. Also, please don’t suggest yoga or veganism as a cure.
18. Be aware of the bigger picture.
Remember that you don’t know everything about someone’s life just by what you see over Christmas or at one party. Not everyone who is sick is visibly so. Just because your cousin doesn’t “look sick” in her Christmas dress, heels and full face of makeup doesn’t mean she isn’t.
19. Reach out and invite people.
Even if you think someone who is chronically ill/disabled won’t be able to make your event, please still invite us. This gives us the opportunity to come if we are able to (rather than being isolated) or to feel wanted even if we can’t. Invitations can mean a hell of a lot more to us than you think.
20. Book accessible venues.
You might be surprised just how many venues aren’t accessible for disabled people. If you’ve invited someone who is disabled to your party, check that the venue is accessible and ask them if they have any other access requirements.
21. Confront ableism.
We all know the kind of toe-curling things that can be said over the dining table. If someone says something ableist, call it out. Silence can make us just as complicit.
22. Be understanding that disabled people struggle financially.
Please don’t be offended if someone can’t afford to buy you a present. So many of us get just as much satisfaction (if not more) from giving rather than receiving gifts and a disabled person’s inability to buy you a present for financial reasons will most likely be more disappointing and frustrating for them than for you.
23. Set your expectations.
Don’t expect your chronically ill loved one to suddenly be well for Christmas Day (or all 8 days of Chanukah!). Sadly, we don’t get paid leave from chronic illness that we can give notice for. Of course it would be great if a “good” day happened to fall on the day of celebrations but we don’t get to choose which days they are. Setting your expectations that they may not be feeling well and planning ways to help them and yourselves enjoy the day with symptoms can help curb disappointment.
24. Be aware of how your words might make a disabled/chronically ill person feel.
Watch out for overusing phrases like “I’m so full I could die”, “I don’t know if I’ll ever be able to move again”, “I’ve never been this exhausted in my life”, “I’ve got a serious food coma”…
25. Have a good laugh.
Disabled people are people. Depending on who we are, we can love a good giggle, getting tipsy, cracking rude jokes, bringing joy in a whole host of ways and, basically, just being involved.
We’re not aliens. We’re little Christmas elves working as hard as we can (all year round) to live the best life possible in a world that doesn’t serve us. Maybe this Christmas, you could be the elves for us for a little bit and make the holidays as accessible and merry as possible for all involved.
Image courtesy of Lil McDermaid/Canva