Full disclosure: I had a hard time coming up with a gift guide for today, so I decided to do another holiday topic. In this post, I’m discussing chronic illness and the holidays. More specifically, I’m sharing 10 rules for a great holiday season when you have a chronic illness. This also means that you’re getting 2 chronic illness posts this week! What a treat 😉. I’m sharing this because, as of 2014, there are 133 million Americans living with a chronic illness (x). That is 133 million people trying to get through Christmas, Hanukkah, Kwanzaa, and/or New Year’s Eve, all while dealing with chronic illness. It can be difficult to do! I’m sure 133 million people won’t read this post, but I hope that it will help some people!
Chronic Illness and the Holidays: 10 Rules for a Great Season
Plan your outfits carefully – If your chronic illness includes chronic pain (or you have the pain without an illness), you know how much a comfortable outfit can impact your pain levels. This means different things for different illnesses. Some people are very sensitive to different types of fabrics and if something is looser or not. So you might need to pack an outfit that feels like sweatpants but isn’t. Additionally, if you have heat or cold intolerance, you will need to pack outfits that are particular to your needs. Personally, I get hot so easily, which also makes me nauseous. Since I’ll be at a packed church on Christmas Eve, I need to pack outfits that are breezy. Additionally, I’m Catholic and Catholic churches are not known for having the most comfortable pews, so I will be bringing a sweater with me that I can either wear or ball up behind my back to make the pew a bit more comfortable.
It is also a good idea to pack an even more comfortable backup outfit ahead of time in case the day of the event (a holiday party, Christmas Eve, Hanukkah celebration, New Year’s Eve, etc.) you feel worse than you expected. If your outfit is comfortable, your pain and/or your other illness symptoms will hopefully not escalate too much. The key here is to be strategic!
Plan your response to common questions in advance – You know how when you’re with a group of people who you haven’t seen in a while and you all go back and forth with “How has your year been?” or “How is work?” or “What have you been up to this holiday season?”? Whether that’s your family or friends at a holiday party, it’s annoying to deal with those questions for everyone, but it’s especially annoying when you have health problems. When your year has involved surgeries and hospitalizations, it can be hard to answer these questions. Especially if your health is at a point where you can’t work or go to school at the moment. If you think that you are going to be asked questions like these, prepare how you’re going to answer. This is especially helpful when you experience some form of brain fog and think that you might struggle to answer these questions in the moment.What to do for a great holiday season with chronic illness Click To Tweet
Plan your responses to questions about your health specifically in advance – If your health is well-known among the people you’ll be interacting with – or you use a mobility aide or some other visible injury/disability – try to come up with an answer to questions ahead of time. This way, you can find a way to share what you want without it becoming a big thing if you don’t want it to be. I know that I never want to say exactly how I’m feeling because a) half the time people are asking to be polite and b) if they do really care, I don’t want to upset them if I’m not doing amazingly. By planning my answer ahead of time, I don’t feel anxious when someone asks me and I’m able to give a succinct answer before moving the conversation to something else.
Be as strategic as you can when making plans – This isn’t always possible, but if you can, try to make your plans for when you are most likely to feel well or okay. In my case, this is earlier in the day. Some years, my family goes to some sort of Christmas performance like The Nutcracker, Elf the Musical, or a play. We tend to go to a matinee performance because I am very unlikely to be up for going in the evening. Additionally, for several years, I was on methotrexate for my RA, which is a weekly chemotherapy that I took on Sunday nights. This meant that if we bought tickets for a Sunday, I might not be able to go because my pain was always increased on Sundays before my dose. This is just one example of how if you have any control over your holiday plans, I advise that you figure out when you’re best (or at least not worst) on certain days or at certain times.10 ways to make the holidays a bit easier if you have a chronic illness Click To Tweet
Do an inventory of your medications in advance of hectic times – The last thing you want is to run out of a medication when you’re out of town, so check if you need to refill any before you leave. This is especially important if you are on medications that need to be delivered by special pharmacy (like Humira) because that will need to be ordered with plenty of time in advance. This is also a good time to look at everything you have that helps your illness or symptoms that isn’t a medication. For example, do you have a TENS unit? Check your battery stash; mine ran out of batteries a few weeks ago, but I’m glad it was then and not in a few weeks.
Talk to your family and friends about ingredients in holiday meals – This is super important if you have food sensitivities or allergies. If there are foods that you can’t eat, talk to whoever is cooking about that several days in advance, if not earlier. That way, if they’re making something that can’t be made without the problem food, you have plenty of time to buy or make your own version of it. It’s also important to clarify if cross-contact is a problem for you. This is “when a gluten-free food or food product is exposed to a gluten-containing ingredient or food – making it unsafe for people with celiac disease to eat” (x). This is one of the differences between gluten intolerance to gluten allergy or celiac disease; I can’t eat gluten, but if my food in cooked in the same pan that a gluten product was, I’m fine. That is not the case for all people who can’t eat gluten, so it is important to clarify that. If you have a food intolerance or allergy, make sure to clarify to whoever is cooking whether or not cross-contact is an issue.
If you have food sensitivities, pack lots of extra food – This is my biggest tip. People with the absolute best of intentions can still make mistakes. They’re human! But that doesn’t mean that it isn’t frustrating when you find out when you arrive to the party that you can’t eat anything there. For example, people are pretty good about having food alternatives for people who can’t eat gluten or dairy, as those are pretty common. But it’s hard to make something that also doesn’t have egg, corn, and soy. (And, from personal experience, there’s very little that can be bought that fit all of my dietary restrictions. It’s better than it was 5 years ago, but it’s still not great.) All of this is to say that it’s best to pack extra food. Whether it’s a protein bar that fits in your purse or a homemade sandwich at home, I strongly suggest making a back-up plan for your holiday plans.
Have an emergency kit – If you’re going somewhere for a day or evening, create a kit of things for any chronic illness emergencies. This includes your emergency meds (what type they are depends on the type of chronic illness), emergency food just in case you can’t eat where you’re going, extra water, and something to entertain yourself if you need to leave your event but can’t leave for good because your family and/or friends are staying behind. My personal emergency kit has pain meds, anxiety meds, nausea meds, granola bars or crackers, water, and headphones and phone charger. If you’re going somewhere for a few days or a week, you should also include heating pads and/or ice packs, depending on where your pain is and what type if it is; computer, along with its charger; and comfortable clothes.
Here’s an example of when that emergency kit came in handy. I made the horrendous mistake in 2013 of having my infusion on December 23. The next day – the day that typically has the most recovery symptoms – was Christmas Eve. My dad and I took the bus from Boston to Portland, Maine, where we met my mom and sister, as well as family friends, for lunch. We then went to the 4 pm Christmas Eve mass at the church I grew up in, which was one of the worst experiences of my life due to my recovery symptoms. I left Church early – on Christmas Eve! – because I couldn’t handle it anymore. I went out to the car, changed into sweats, took my medication, and took a nap until my family came out of church. Moral of the story? Be prepared!
Make a detailed gift shopping plan – Does your holiday season involve gift giving? Plan, plan, plan ahead! If you can order things online, do that so you don’t have to go out to stores. If you have to go to stores, figure out where exactly you’re going and for what so you can limit your time spent in the fatiguing and painful activity of shopping. You should also start shopping as early as possible so if life happens closer to the holidays you celebrate and you’re unable to go shopping later, you have it done already. (PS – check out my gift guides here)
Figure out what events are most important to you – One of the worst things about having chronic illnesses is it can make us miss events. There are some things we can’t control, like the days we feel terrible. But we can (sometimes) control if we overdue it, so it might be good to decide what events the holiday season are most important to you. You might need to decline other events around it so that you are well enough to go.
What are your rules or guidelines for having a great holiday season with chronic illness?
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