The Ultimate Chronic Illness Holiday Survival Guide

I’m thrilled that I have teamed up with Carolyn of @chronically_cheerful to bring you The Ultimate Chronic Illness Holiday Survival Guide! As two 20-something ladies who have both had their world dramatically shifted by chronic illness, we are sharing some of our favorite tools and insights which we’ve used to help cope with chronic illness during the holidays.

We hope this portable, pocket-sized guide (i.e. fits in your phone) will help you feel less alone this season; that it can be a resource that empowers you to take care of yourself with more confidence and less guilt through the holiday hustle and bustle.

It’s broken down into four major sections (relationships, socializing, pain management, mindfulness) and meant to give you actionable, practical tips on how to navigate this time of year with a little more grace and ease. Enjoy!

Part 1: Relationships and Boundaries

DO communicate in advance with friends and family:

• Setting expectations about what is realistic for you and your body over the holiday season can help get everyone on the same page. Talking with friends or family members ahead of time about your activity limits (time and stimulation), dietary needs and/or any other boundaries (like preferences for lights, noise, smells and even health-related discussions) can better prepare others for what you need to stay as present and low-pain as possible. This isn’t being high-maintenance; speaking up for yourself is about being proactive, thoughtful and a good self steward. 

DON’T give into guilt:

• There is so much pressure around the holidays to meet others’ expectations, especially if you have a tendency to people please! It’s an impossible ideal that we can do it all and make everyone else happy. Most importantly, the holidays shouldn’t come at the cost of your physical or emotional well-being. Declining an invitation or leaving early doesn’t mean you don’t deeply care about those you love — it means you’re courageously prioritizing your health and respecting your limits. Try to let go of any false sense of wrongdoing by remembering family and friends truly want what’s best for you, even if that means time together is cut short.

DO lean on others for help:

• You are allowed to ask for and receive help without fear of being a burden. You’ll often find the people who love you most are happy to be given specific instructions on what they can do to support you and appreciate knowing there are things they can do to help when they see you’re struggling. Think of your use of clear communication when it comes to asking for help as a gift to your loved one. Try asking for support with something tangible like a reminder to rest, an extra hand wrapping presents or backup reinforcing your boundaries with family members who can sometimes drain your limited energy.

DON’T risk your health in order to accommodate overnight guests:

• One of the best parts of the holiday season is getting to spend face time with loved ones who you don’t get to see very often. However, having guests in your home can put a serious strain on a chronically ill body that’s already struggling to keep up with the extra demands of this time of year. If you’re not able to handle overnight guests, it’s OK to ask friends or family to stay elsewhere. Alternatively, you can have a candid conversation before they arrive where you communicate clear boundaries, such as when you need quiet time without interaction or why you need your own private space.

DO practice navigating health dialogues: 

• Rehearsing what you want to say about your health can make conversations with friends or family members more comfortable, especially when chatting with others who may be uninformed or insensitive about your needs. Remember, it’s your choice to talk about your health or not! You owe this personal information to no one, even when well-intentioned people prod or persist for details. Also, those close to us frequently feel compelled to give unsolicited advice. Try your best to let go of defensiveness and any lingering frustration. Ultimately, even the most misguided advice comes from a place of concern and staying upset will only cause you suffering.

Part 2: Socializing and Events

DO be mindful of your nutritional needs:

• Holiday schedules and events can create logistical difficulties when following whatever eating style is necessary for you at the moment. To ensure you’re able to stick to your dietary needs, try pre-eating at home before heading to an event, packing a tupperware of “basics” (protein, rice, veggies) to bring with you and staying well stocked with snacks to prevent putting yourself in a position where going too long without food kicks up a flare. Not everyone will understand your dietary needs, and that is OK! You are the one who has to live with the payback for eating food that doesn’t agree with your body, so you are the one who gets to decide what you need to do for you to get through. 

DON’T blame yourself if you’re the last one to arrive and the first one to leave:

• The intense socializing and stimuli during holiday gatherings can quickly cause symptoms and pain levels to spike. Arriving late or leaving early is often a necessary tool to manage symptoms and is in no way a failure to fulfill a social obligation. You can reduce self-oriented pressure and guilt by telling hosts ahead of time if you’re arriving late and/or planning out an “exit strategy” should you need to suddenly leave. No matter how much in-person time you end up spending at a holiday gathering, know that you never need to “prove” your pain to justify your accommodations.

DO create breaks for yourself during events:

• Many holiday events demand more energy and stamina than you might have even on your very best chronic illness symptom day. It can be difficult not to slip into trying to “keep up” with everyone around you. Check in with yourself, often, to evaluate if you are pushing yourself too hard. When you make a habit of tuning in with yourself and acting accordingly (ex: going to rest for 20 minutes in another room), you’re more likely to be able to participate in events in the long term. The holiday season is not a sprint! It’s a marathon. Treat it as such by giving yourself breaks to slow down. Some practical ways to create breaks are: ask the host if you can use an empty room during the event, set up a cozy blanket nest in your car or step outside to go for a short (reduced stimuli) walk.

DON’T say “I’m sorry” when you mean “thank you”:

• It’s impossibly easy to slip into over-apologizing during the holidays. “I’m sorry I can’t come” or “I’m sorry I couldn’t help with that” can start to tumble out of your mouth automatically without you even noticing. The issue this can create is that saying “I’m sorry” implies you have wronged someone. When your health limitations are the reason you are tempted to apologize, practice replacing “I’m sorry” with “thank you for understanding.” When you make this switch, the person you are speaking to is more likely to respond with “you’re welcome” or “of course.” This subtle change redirects frustration at your symptoms instead of at you. In saying something like, “I really hate to miss the party tonight, but I feel terrible physically. I wish I could be there, thank you so much for your understanding,” you leave room for compassion (instead of opening the door for wrongly placed fault!).

DO make a plan with loved ones to stay connected when you can’t attend an event:

• There can be so much fear around the holidays when you can’t trust your body to make it to all of the special occasions that are important to you. When you do have to make the decision to skip an event, it’s often painful both emotionally and physically. Something that can help with this is acknowledging that reality and setting up a plan to address it with your support squad. Communicating openly about the feelings of loneliness that result from being stuck feeling sick at home when you so badly want to be out with your loved ones can help to ease the pain just a bit. Periodic texting check ins, a phone call or two or even a quick FaceTime can be extremely supportive and a very bright spot in a solitary day at home. It’s not selfish to strategize with your partner or family on how to make the process of being left out a little bit less emotionally painful, and it’s likely you’ll find that they are more than willing to do whatever they can to support you through a tough day (because they hate leaving you behind too!).

Part 3: Pain Management

DO order groceries and gifts online:

• You might remember past holidays where you did a full-day “mall crawl” (perhaps even multiple times) to find the perfect present for everyone on your list. Maybe multi-hour Costco trips to stock up on all the holiday necessities for preparing a big meal were the norm. Those activities demand a lot of energy and sensory stamina, both of which are precious commodities for a chronic illness warrior during the holidays. Take a look at what is on your to-do list and where you can simplify. It might seem silly to order your groceries online, but doing so could save energy for face-to-face interaction with someone you love. Services like Instacart deliver from major grocery store chains for a minimal delivery fee. As for the mall, if you know this is a huge trigger for you, allow yourself to shop online instead. I miss the ritual of walking through all of the stores’ holiday displays, but at the end of the day, it’s just too taxing on my system and uses up energy I’d rather be spending on the people I love.

DO pencil in some extra rest and self-care before, during and after any festivities: 

• We all know resting and taking frequent breaks is essential to managing fatigue and prevent flare-ups. But proactively scheduling in rest can also positively reframe how you perceive rest itself. Taking lots of breaks can feel especially weighty and lonesome if you’re the only one who has to leave a fun activity or spend all day at home in the quiet and dark. Instead, looking “forward” to quiet time as a purposeful opportunity to recharge and stay on track can shift feelings that you’re merely wasting time. You’re fulfilling a promise to yourself to practice meaningful self-care.

DON’T use rest time half-heartedly:

• It’s incredibly tempting to distract your mind and body during designated rest time by scrolling on Instagram or watching Netflix — especially since resting can feel so lonely. But you do yourself a disservice by not fully utilizing quiet periods and giving your body the best chance it has to rebound. From my experience, “true” rest periods with minimal distraction and low/zero stimuli better enables the body to recharge and recover from holiday activity. Also, taking emotional “rest” from all the highs and lows of the season can be equally important for your well-being, so be sure to build in time for you to process all the feelings of the season.

DO start planning ahead as early as possible:

• If you’re traveling out of town for the holidays, adopt the mentality that there is no such thing as too much preparation. Managing symptoms like brain fog and fatigue sometimes means that there are small windows of clarity to pack medications, devices, gifts, toiletries and other things that require organizational brain power. Open up a suitcase and put it in a corner somewhere and gradually fill it with the items you will need as your trip gets closer. This will help you to feel less panic in the day or two before leaving, and give you some wiggle room if a major flare happens to strike and you don’t feel up to packing at that time. The same advice applies if you are spending the holidays at home too! Wrap gifts and plan recipes (or prepare things ahead of time) as your energy bursts or low pain moments allow.

DO create an extra special environment at home:

• As a season of heightened social activity, the holidays can highlight just how much time us spoonies actually spend inside at home. While staying indoors can feel isolating, it can also be an opportunity to embrace cozy holiday rituals and comfort — especially since winter already makes cozying up a little more appealing. You deserve to make your time indoors full of extra calm and hygge, whether that’s putting up twinkly lights; getting a cuddly blanket and dedicating an evening to hot cocoa and holiday tunes; or leaning into uplifting movies that are full of happy endings and the magic of the season.

Part 4: Mindfulness and Mindset  

DO soften your expectations of yourself:

• Holidays are stressful times for anyone, yet alone those of us dealing with the complexities of chronic illness! Release some pressure by acknowledging you don’t need to feel constantly festive and repress being frustrated, sad, grumpy or anxious. Processing and honoring your experience without guilt or shame will help you soften into self-compassion instead of self-criticism, especially when things don’t go according to plan. And although mindfulness during precious moments with family and friends is a wonderful goal, be gentle with yourself if you’re too consumed by pain, symptoms or even grief to feel 100% present.

DON’T criticize yourself for your choices:

• Managing chronic illness is all about making compromises. You are allowed to make a decision that’s not necessarily in the best interest of your physical health but is in the interest of your mental or emotional well-being. It’s OK if you took on a little too much or you decided to indulge! Just watch out for your own inner critic with words like, “I shouldn’t have done X” or “I should have done Y differently,” which can sting even worse than the physical aftermath from staying out too late or eating something off-regimen. You are being a human being who deserves to fill up your soul cup!

DO create a personalized holiday priority list:

• It can be overwhelming to navigate all of the events and traditions of the season and figure out how to successfully manage so much activity. To prepare, make a list in advance of all your events or gatherings. Seeing upcoming plans in writing can help you internalize the level of energy and preparation required for each one and think through your physical, mental and emotional limits. Then, actually rank your top priorities. This is not an easy exercise, but you’ll give yourself lasting peace of mind by figuring out ahead of time which events make the most sense for you. It’s OK if this year’s list looks different than it used to or doesn’t conform with the expectations of others. Choosing one occasion over another in no way means that you care less about lower “ranked” people, events or past memories; it means you are creating a meaningful holiday that works for you and your limits right now, and in your present circumstances.

DO be a light of compassion, gratitude and warmth:

• There is such a strong link between kindness and well-being. Use this season to be someone who does good and spreads love. Not only will it make others feel good, but it can also significantly help to boost your mood, sense of connectedness and joy. Find ways to allow kindness to meet you wherever you are. If you’re homebound, send thoughtful texts or handwritten notes to the people you love. Or send notes to doctors’ offices who have been supportive throughout the year. Do what you can and be proud of yourself, no act of kindness is too small.

DON’T succumb to pressure around the New Year:

• There is so much pressure around New Year’s to reflect on the past year (and for 2019, the last decade!) and make plans and goals for the future. This time can bring up tons of emotions about your healing journey, including sadness and a sense of loss for unfulfilled goals and dreams. More than ever, trust that you’re healing at your own pace and in your own time. And release the need to end the year on a symbolic high note with your health: your body doesn’t know what time of year it is! Also, there’s no need to make New Year’s resolutions just because the people around you might do so. Try to give yourself the grace and compassion to honor today and while having faith in your ability to meet the uncertainty of tomorrow.

While this holiday season may look different from how you hoped or from those of years past, you deserve to find peace and joy exactly as you are. Your holidays can be memorable in their own way, however you choose to celebrate.

In between all the extra planning and pain, there are magical moments waiting for you.

Above all, know you are never alone! Come and share your holiday struggles or joys online with the chronic illness community (our crew is most active on Instagram). Others who truly “get” what you’re going through aren’t far away!

Sending you all of our love,

Natalie + Carolyn 

Follow this journey on The Mindful Migraine.