Hosting Loved Ones With Chronic Illness

Having just recovered spoons from the Thanksgiving festivities, it is now time for another round!  With the solstice just past, Chanukkah just beginning, Christmas and Kwanzaa around the corner… not to mention New Year’s Eve!  Whether you’re celebrating a holiday, embracing the new season, or simply making use of time off to visit with loved ones, this week is likely a busy one!  

We want to shout out all of the hosts out there.  It’s one thing to make time for feasts, and another entirely to create them! We know how hard you work and the care you put into making everyone feel welcomed.

It can be challenging to create a space, time, and menu that fits everyone’s diverse needs.  When you’re the one responsible, it can also add an emotional toll of worrying that you will disappoint someone.  

We’re here to help!  We’ll offer tips for how to set up an accommodating atmosphere, and also how to communicate in those tricky moments.  But most importantly, we want you to know that, if you do mess up, it’s ok! We are all human. You can’t possibly know and do everything.  The important thing is that you communicate through these (inevitable) failures. Often hosts will feel guilty and end up acting cold and distant to the affected guests, or simply avoiding the topic altogether.  This only further alienates the loved ones who need the most acceptance.

If you do mess up (again, it’s probably going to happen!), try approaching the guests affected and admitting that you flubbed.  Maybe you didn’t set up the table in a wheel-chair accessible way, or you didn’t remember to avoid garlic in the side dishes. Maybe you forgot to check in on a relative who lost someone last December and could use some extra support.  Whatever it is, be open and honest. Offer a genuine apology, and ask if there is anything you can do differently now or in the future to make it better. Let them be hurt or disappointed without getting defensive — they may just need to express their feelings in order to no longer feel them!  And then move on. There’s no need to carry your feelings of embarrassment or guilt throughout the party.  

Now that you are hopefully less afraid of making mistakes, here are some things you can do to make your event even better!

Understand their perspective

Being chronically ill is not like breaking your leg or having a bad virus.  It’s a constant weight, even when not currently symptomatic. With an acute illness or injury, it feels natural to ask for some help and leeway.  You know you can chip in the next time. With chronic conditions, we don’t know if next year will be any different. We worry that our relationships will be constantly tainted by needing to ask for help, that people will see us as less independent or as high maintenance.  As a result, it’s hard to ask for help! It’s much easier to be asked.  

So, instead of going about business as usual until asked otherwise, try reaching out to all of your guests to ask if anyone needs accommodations!  Share what you plan on serving and maybe other details that could impact, like having a fire in the woodstove or the dining room chairs that don’t have any cushion.  You could do this in an email, facebook event, or even create an easy survey!  Odds are, most of your guests will simply say “sounds great!”  But it gives the opening for someone to mention a dietary restriction or needing help with stairs.  If they do need an accommodation, you’ll feel better being able to address it ahead of time than being blindsided the night before when they finally get the courage (or find out what you’re serving and realize they need) to ask.  Odds are, they will even take care of most of the accommodations themselves, like bringing a nebulizer and ice packs to combat the woodstove, bringing a pillow to cushion the chairs, or offering to bring a safe side dish to share.

And remember, if things don’t go perfectly, it’s really ok!  If they do get upset about it, try to understand that it’s not about you — it’s frustration at their situation, guilt at making others go out of their way, and sadness at not being able to fully participate.  If they have an intense emotional response, express again how sorry you are that it didn’t work out, that you hope to get it right in the future, and acknowledge that you know how frustrating it must feel for them.  Consider letting them share the myriad emotions bubbling up and try to understand their perspective as much as you can.  

Include everyone

When seeking information about particular needs, send it to everyone in your guestlist!  Not only will this avoid singling someone out, but there might be someone you didn’t know about who could benefit from being asked.  Also, if it’s possible to make an accommodation standard for everyone, it can help individuals feel normal!  

In the spirit of inclusion, remember also that this time of year can be difficult for those who are grieving, or who can’t be with someone they love.  Acknowledging this in some small way can also make a big difference in their feeling included.

Buffet and/or potluck

Have a lot of dietary restrictions? Put out the base ingredients and allow guests to create their own!  For example, create your own pizza, baked potato bar, salad bar, etc. At the Ehlers-Danlos Society’s conference in 2018, they recognized that many guests would have some food issues.  So, they had plain pasta and lettuce, that you could then add whichever ingredients work for you! It was still delicious, since you could add sauces, seasonings, and meats that had been marinated for extra flavor.  

Potlucks also allow for options, and people can then have control over the dish they bring.  But consider asking all guests for restrictions first and then send the list to the group, asking that they all accommodate when possible, and label their ingredients.

It’s important to note, as well, that not everyone is able to eat, period.  Check in with these individuals ahead of time to see what they would prefer. Do they want to still join in the mealtime for the social aspects?  Or would they rather come a bit late to join in the post-meal festivities? Make sure to include some sort of activity that would help them to feel festive without the food, like decorating with lights or playing a fun game.

Set a routine

If you are likely to host events in the future with similar needs, communicate at length and write down guidelines so that in the future you can just accommodate without needing to rehash it all.  This will ease your stress in future years, and help your loved ones to feel validated. It shows how much you care to want to know every detail and actually write it down!  

Make sure, if going through all that effort, to keep it in a place that you’ll remember next time!  You could consider using a google doc or google sheet; that way, the spoonie(s) involved can update it as their needs change, so when you check it, you have the most up-to-date guidelines!  You can also share these cloud-based documents with multiple people, so that no matter who ends up hosting, you all have the info.

Check in

Before the meal or other main event, and then once or twice afterwards, check in to see how they are doing!  Ask open-ended questions that invite reflection without judgement. For example, instead of “did you like your food?” try “How are you so far?  Anything else you need?” Even if they respond that they’re good to go, it will mean a lot to know that someone is thinking of their well-being.

That was a lot!  If you don’t get to all of these tips this year, that’s fine!  You can revisit them later as you work to improve your process.  Remember that it’s also important for you to take care of yourself, and hosting can be quite draining!  If you anticipate this being too much for you, try delegating! You can also be upfront with your spoonie guest(s), that you would love to accommodate in specific ways, but you are worried you won’t get to it all.  That lets them know you are trying and they may have enough energy to make care of some of it for you.

This time is about celebration and fostering the relationships we cherish!

We’d love to know how it goes, and if you have any questions — let us know in the Friends in the Fight facebook group!

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