Oh the holidays! Some hate them, some love them, but all seem to associate a certain level of stress with this season. While no one has experienced the holidays in the midst of a global pandemic yet, we, as people with chronic illness, have had practice in adapting to circumstances beyond our control and make the best out of sucky situations.
I fell off my bike six years ago and have since spent six Christmases, six Thanksgivings, and six birthdays battling the symptoms from my mild traumatic brain injury. It took me a long time to get to a point where I don’t dread Thanksgiving or Christmas, and today I would like to share some of what helped me get there. But as we all know, each experience and everyone’s challenges are unique. So I combined some general tips from the Chronic Warrior Collective forum as well as suggestions from the wonderful Kat Harrison of the Mighty.
I found that being open about my struggle and experiences was the most helpful in adjusting everyone’s expectations. For a long time, I had to cancel on people all the time. My symptoms were unpredictable and would hit me within minutes; I could go from talking in full sentences to not being able to stand. So I could not predict what I was and wasn’t able to do and oscillated between saying yes to everything (first year) and becoming a hermit and saying no to everything (2nd-4th year).
Eventually I began to understand my triggers and symptoms and found a bit of a balance: If I made it clear that I might not be able to go to my niece’s winter play AND have a family dinner in the same evening, but would love to do one of the two, it went over a lot better than saying I’ll be there and cancelling at the last minute.
It takes time to become familiar with your illness and your specific symptoms and triggers. I learned to avoid crowded rooms or loud spaces, which is especially tricky this time of year (when there isn’t a pandemic raging). I have asked to turn off background music so I could concentrate on the conversation and to dim some lights so they wouldn’t trigger a horrible migraine. I learned to verbalize my needs and share my struggles and it has helped my family understand when and why I had to cancel or say no to something. But all that takes time. And my number 1 tip for this holiday season (particularly this brand new, strange one):
Be kind to yourself. Be gentle with yourself. Even the best-laid plans can change. You might react to something you didn’t think you would, a conversation might tire you out more than you thought, a dinner might take longer than it was meant to, and you might just be sicker that day than you wanted to be. But know that you tried and that this disappointing day does not mean you won’t have better days and better holidays ahead. It just takes time. You are trying and learning and that is all we can do. If you feel like you disappointed people by going home early or cancelling, remind yourself that you listened to your body and did what you thought was best. That is a very difficult thing to do and can get lost in the frustration of our bodies not functioning the way we want them to. Be proud of being your own advocate and learning to make hard choices. Trying to find a balance between your symptoms and longing for some “normalcy” is a difficult rope to walk, that we are all on together.
Reading through some of the advice from people in the forum, I am struck by how despite having different diagnoses, we all share a similar struggle, especially during the holidays and times filled with societal and familial expectations. Some of their tips were:
Kat Harrison and I seem to both fully believe in preparations- both for ourselves and also for our families. Holidays tend to sneak up on us, but I really recommend taking some time NOW to think about what a typical holiday looks like or (since no one’s holiday will look totally “normal” this year) talk with your family about what the plans are this year.
- If it is your first holiday with a chronic illness, I recommend remembering what you usually did throughout the (e.g. Christmas) day and think about how those activities would feel now. Imagine the number of spoons (mental/physical energy) you currently have for a normal day. And then think about how draining some holiday activities might be with the new symptoms. See if some activities could be adapted to make them easier on you. If you have to pick and choose some activities or get-togethers, think about which ones you really don’t want to miss and which ones feel too overwhelming to attend.
- Talk to your family
Once you have decided what your limitations are and what you are willing and able to participate in, I really recommend reaching out to someone you are planning to celebrate with and share your thoughts.
Kat and her mom had a conversation where her mom told her everything that was going to happen and then Kat made it clear that she wouldn’t be able to do it all and that she would have to pick and choose. Kat went on saying that while that is not fun, the honest conversations and foresights have really helped her.
I am very lucky to have a small and very understanding family, so over the years, we have adjusted our traditions, based on my needs. If I need to eat at a certain time, we will try and make that happen as the big family meal, if I am absolutely done after an hour socializing, we will try and make sure to spend that hour as the gift exchange (after which everyone knows I will need a nap).
- Take care of yourself
This is often easier said than done. But in my case, preparing my family members and sharing what is difficult for me, helped remove myself from certain activities and lie down in a quiet room without a long discussion or encountering much surprise or disappointment. I am also lucky to have my husband as a constant advocate who asks me regularly how my spoons are doing. That question makes me take a second to assess and check in with how I am feeling. If you don’t have my amazing husband on your side, try and remember to do this anyway. It’s easy to get swept up and continue chatting or hanging out, but that might make the next day a lot more difficult and taking a break or going to bed, might allow you to have a good next day with festivities and holiday cheer. For example, when my husband was not around, I have set alarms to help me not stay up past what I thought my limit was. If the alarm went off, I had to take a moment to ask myself if I wanted to stay or go to sleep. Sometimes I lose sight of my illness if I am excited and happy in the moment, and pay for it later when my body got way to overwhelmed and has to completely recharge.
Even if your family grumbles or doesn’t get why you had to leave early, know that you have a whole network here with people who “get it”. It’s so hard to be a self-advocate and feel like you’re disappointing others by having to take care of yourself, but it is the only way to continue to function at your best level. And we all know how hard you try and give what you can.
- Follow your doctor’s advice
If you have a diagnosis and are in care of a physician: Listen to that physician. Set your boundaries on what to share about your diagnosis and symptoms with your family, but don’t eat food that your doctor told you not to, just to placate your family.
Jennifer S. mentioned in the forum that “There is absolutely NOTHING wrong with you cooking ahead and bringing your own safe food to be plated at the same table with family. Do not let *anyone* shame you for doing it.”
And I whole-heartedly agree. You know your body best and how it reacts to food, so trust that. I guarantee if the people who seem to be judging you, would spend one day in your body, and they’d experience the bad reaction to food or drinks, they would absolutely get it. It’s just so difficult when the struggle is invisible.
I hope these collected tips have helped in preparing and figuring out how to have good holidays during this crazy year.
If you are spending the holidays alone, or you would like to vent about how your holiday did not turn out the way you hoped it would, or share a beautiful memory when you had a great time, my inbox is always open, and in the chronic warrior network you will find “your people” who can relate to however your holidays are going.
About the writer: Mirjam Harrison is a chronic illness warrior from Montana, USA. She has two cats who are her world. She loves baking, knitting and puzzling when she feels up for it.
You can connect with her on IG: @mirjam_helena