The holidays don’t have to be perfect to be joyful, especially when you’re living with a rare disease or chronic illness. In this episode, I share how I’ve learned to let go of stress, overspending, and obligation — from going out for Thanksgiving dinner to skipping holiday travel — and focus instead on peace, connection, and real joy.

Redefining Holiday Joy with a Rare Disease – Ep. 24 – The Fine, But Not Fine Podcast

The holidays don’t have to be perfect to be joyful, especially when you're living with a rare disease or chronic illness. In this episode, I share how I’ve learned to let go of stress, overspending, and obligation — from going out for Thanksgiving dinner to skipping holiday travel — and focus instead on peace, connection, and real joy.

Episode Transcript

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, health care battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Are you ready? The holidays are coming, and if you’re anything like me, that can stir up a whole host of feelings, maybe a little bit of excitement, some nostalgia, maybe some stress, a little bit of dread, the holidays can be such a complicated mix. They’re supposed to be joyful and maybe even magical, but they can also bring in exhaustion, financial strain, grief or that pressure to perform, happiness when you really do not feel like it. And today, I want to talk about how we can prepare for and actually get through the holidays with something better than fine. I want to talk about doing the season in a way that protects your peace, your energy and your wallet, while bringing you real joy, and not the kind that looks good on Instagram.

So, are you one of those people that thinks the holidays are supposed to be like a movie, beautiful table settings, homemade cookies, big family dinners, everyone laughing together by the fire? You know the Hallmark version of the holidays, right?

I don’t think I’ve ever really been that in entirety. My upbringing was one where we certainly had big family dinners and that kinds of things, but I never really lived near family. We lived far away at a time when traveling wasn’t as easy as it is today, and also, you know, dates were kind of flexible, because everyone may not be home, someone may be working on those days. But I get the appeal, I get the attraction right. And when I tried to make it look that way, I found I end up completely drained because I spend more time trying to curate joy than actually feeling it.

And that’s because I think perfect holidays are an illusion, and chasing that illusion steals the real joy that’s available, the joy of things being enough. So I do things a little bit differently.

Take Thanksgiving, for example. My family used to do the thing we get together, someone would cook, we’d clean, we get all the dishes out, we’d plan the thing and set the table and do everything, and then clean up afterwards and coordinating. And it was enjoyable, but it was a lot of work, and it was a lot of stressful. And, you know, my parents are getting older, I’m busy. I obviously have my own issues.

So what we do now: we go out to eat, and honestly, it’s wonderful. We have great food. No one has to scrub a single dish. We take a walk afterwards, and we get to enjoy each other’s company. There’s no frantic morning, no kitchen disasters, no exhaustion by 3pm just good food, laughter and time together. It’s peaceful, it’s joyful, and it’s still Thanksgiving, and yes, someone else is working, but we make sure to compensate for that, not that compensation should always be it. But you know, that’s the thing.

Joy doesn’t have to look like some made up tradition for a Hallmark Channel. It just has to be enjoyable and peaceful and something that you actually find you like doing.

And let’s talk about travel, travel during the holidays. Specifically, I do not travel during the holidays anymore, and I really don’t like people coming to travel to visit me for the holidays either, because there’s a lot of stress involved in that. And you know, when I used to travel, it was sort of thing like I had to there was a little bit of guilt, a little bit of obligation. But the reality was, I never found the experience to be worthwhile.

For me, airports, weather delays, overstuffed schedules, too many people trying to travel at the same time like When, when have you known a Thanksgiving weekend to happen in the US without some huge weather issue at an airport? Right? It’s same thing at Christmas. Why subject ourselves to all of that mess? Right?

It’s just It doesn’t fit with joy. It doesn’t fit with enjoyment. It doesn’t fit with, you know, the pace of doing those things at the holiday. I’m a homebody at the holiday, I take time to rest. What I do is I travel at other times of the year, when it’s calmer, it’s less crowded, and I can actually enjoy the experience.

And as far as people coming to visit me, like I said earlier, I don’t want them coming at the holidays, because then I have to go to the airport and pick them up with half a bazillion other people going to pick someone up from the airport. They don’t come in at a convenient time. They have to leave the house at four in the morning to catch their 6am flight, all of those things, I do not find any of that enjoyable. I find it misery. It’s just miserable, and I don’t want to partake in it, and it steals my time, because, you know, work is a little different at that time of year, at least in what I do, and only way I can take advantage of that is to not over schedule and not overdo things.

You know, because I learned this at an early age. Being the child of a military member, joy does not have to be tied to the calendar. You can visit people in February. You can celebrate together in March. The connection matters a heck of a lot more than the date on the calendar.

So let’s talk about money, and because this time of year, it’s a big deal, the pressure to buy, to decorate, to gift, to host, it’s it’s pretty constant, and this is at a time where those of us with a rare disease are having to plan for the fact that come January, February, we’re going to be spending a lot of our money on out-of-pocket expenses for our health care, because it’s a new calendar year, a new health care year, and we’re going to be meeting deductibles and out of pocket expenses at the front end.

You know, I put out a lot of money for my health care in January and February, and I need to get that money from somewhere, and blowing it all in November and December wouldn’t help my situation.
And it can be kind of easy to feel like we’re failing if we don’t do enough, if the gifts aren’t impressive enough, or if we skip a party, or if the wrapping paper doesn’t match the theme or doesn’t have the right bow.

You know, here’s the truth. It’s no surprise, overspending just does not lead to joy. It leads to guilt, stress, credit card statements to steal your piece long after the tree comes down.

You know, I learned I used to really do a lot of the gift wrapping. You know, the big bows with a wire ribbon matching everything I’d pick stuff out for the year. You know what I do now, brown paper bags with a handle and a ribbon and tissue paper, and that’s it. And the reason I do that is, I can use a brown paper bag with a ribbon and tissue paper any time of year. I can put a different color with it. I can go with green or red, or maybe I’m doing a burgundy Christmas, whatever. But I don’t have to go buy I don’t have to worry about getting it all together. It’s just so much easier.

There are also things you can do to help you focus on meaning over money. So ask yourself what actually matters to me? What brings me joy that money cannot buy? Now for me, that’s time, right. Slow mornings, taking a walk with my husband, maybe going over and walking with my parents, having dinner out without the cleanup, staying cozy at home. You know, none of that requires a shopping spree, and you do not have to prove your love through presents.

The people who really care about you, they’d rather have your calm, or your laughter, your presence, your fun, whatever it is. And you know, I try and think, yeah, I do give thought to gifts for people. I don’t just kind of run out and buy something. And I’ve learned as I’ve gotten older that I focus more on giving consumables, right? I don’t want people giving me any more stuff that I have to put in my house and store. You know? I have a sort of one in, one out rule, because it can get very easy to have too many things. We’re very blessed, very fortunate to have a lot.

So for someone who cooks, I might get them very specific ingredients that are, you know, a little bit gourmet, or a little bit unusual, something that might not be part of their everyday or maybe it’s about giving someone an experience that could be consumed. And this isn’t where you have to go all out and do 48,000 things, but it might be as simple as buying, you know, tickets to a local play for someone for gift. It doesn’t take anything up in their house. They get to go ahead and, you know, go out and have a little bit of fun.

I bought my parents in the past, Car Wash gift certificates, because they don’t have to wash their car. They get to go someplace they aren’t paying for it. So think about things that are really, you know, appropriate. You don’t have to spend a lot of money.

You can make things yourself. I used to make brownies in a jar, you know, and it was basically all of the brownie mix and everything. So someone just had to add the liquid ingredients, the eggs, the oil, the butter, whatever it was that went into it, and have little recipe for them. And that way they could make them when they wanted them.

Because you’ve got to set a budget. You’ve got to stick to it, you know, experience gifts or consumable gifts, as you know, can be really helpful. You can even skip the gifts all together and do something that feels meaningful. You can volunteer.

I had several friends that we went one year and we cooked Christmas breakfast at the homeless shelter in our community. Now, we got up very early Christmas Day. None of us had kids, and we went over there. And, you know, we just had a blast getting everything together and making the Christmas Day for some people who were in a homeless shelter, you know, slightly better. I mean, it’s not a home.

Obviously they would have loved to have a home instead of Christmas breakfast, but we did get them Christmas breakfast, and they had sausage and bacon and pancakes and and I don’t remember if we had waffles. We had so much food, it was crazy. But the whole point was, let it be indulgent. Let it be special for those, especially, you know, helping people when they’re having a hard time can really help you appreciate the value of what a gift actually is, and a gift doesn’t have to be something that’s bought at a store.

Share stories, get together with friends, watch movie marathon and pajamas. I mean, binge watching, right? Isn’t that something particularly fabulous we can do?

Because the reality is, Joy doesn’t come from spending. It comes from connecting. And human connection is something that we don’t give enough attention to. It’s so meaningful for us in our lives, for keeping us grounded, for keeping us happy for keeping us joyful, we have to interact with the people that we care about.

So before the holidays even begin, take the time and ask yourself, what do I want this season to feel like? Not what you want to do, not what you think you should do, but what you want to feel?

Do you want to feel calm? Do you want to feel connection? Do you want to feel rest or laughter? Because once you know that, you can then make decisions that support it.

If you want calm, maybe that means fewer parties, less cooking and more quiet nights in if you want connection, maybe that means smaller gatherings or intentional time with the kind of people who fill your cup.

The point is to create your own version of holiday peace, not somebody else’s highlight reel or something that you think is going to look particularly awesome on social media.

And you know, when I think about joy now, after living with an incurable rare disease for a decade, it’s not loud or flashy. Honestly, it is not big joy. It’s small, it’s human, it’s real. It’s taking the walk after Thanksgiving dinner, right? That crisp air, because it’s not freezing cold where I am, if you were in Alaska or something, you might have a different approach to what you’re doing after dinner. You might go out and look at the Northern Lights. And that would be awesome. I would love to do that after Thanksgiving dinner.

It could be, you know, something as simple as turning on the fireplace and watching the flames, or just being comfortable enough to say no thank you without guilt, it’s knowing that your worth isn’t tied to how perfect your holidays look. Joy is found in the pauses, the quiet moments where you realize you’re okay, you’re safe, and you don’t have to perform for anyone.

And I’ll tell you this, I used to be even a holiday decorator. Don’t do that anymore. I order one wreath. I get it from a fabulous place in North Carolina. I’ll go ahead and tell you it’s Wishon Evergreens and it’s a real live fresh wreath that looks beautiful on the outside of my house. I hang it on my front door. That is my Christmas decorating. I think I have a glass tree from Blenko Glass in West Virginia that I put out on a table. That’s it, and that makes me happy. I don’t care what somebody else wants to put out, that works for me, right?

So, this holiday season, give yourself permission to do less if that’s what you want, to rest more to spend wisely not just your money, but your energy and your time, and fill your space and your mind and your moments with only those things that bring you joy. Let it be imperfect. Let it be small. Let it be yours.
Because Joy doesn’t need a big stage. I think it needs a quiet table at a restaurant on Thanksgiving, a walk outside and the relief of knowing that fine can actually be peaceful.

Thanks for spending this time with me, and if this episode helped you exhale just a little, maybe share it with someone else who needs that same permission to slow down or do something a little differently. Until next time, take care of yourself and keep on going.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.