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50 Things People With Chronic Illness Worry About During the Holidays

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Chronic illness can make you feel like you’re stuck on an island all by yourself with a hurricane crashing around you — while the rest of the world is a few miles away on another island, basking in the sun, playing volleyball and living life to the fullest.

The challenges and worries that accompany living in an unreliable body can be incredibly isolating at any time of the year, but especially so during the holiday season. On top of feeling physically isolated, it can be emotionally challenging when many friends and family members have a hard time fully comprehending the pervasiveness and depth of the chronic illness experience. During the holidays, this often means having to miss out on celebrating with the important people in your life or making health-related accommodations which are often difficult to explain to loved ones.

There is so much power in knowing other people feel the same way you do when you’re facing a challenging situation — and that is precisely the purpose of this post.

Collecting worries from our Instagram community, I wanted to shine a light on the dark and stormy aspects of managing chronic illness during the holidays to remind you that even when it feels like it, you are not alone.

My hope is that scrolling through this list helps to normalize and validate your own personal experience. When you see yourself in one, a few, many or all of the following scenarios, please remember this: not everyone will “get it,” but rest assured there is a huge, invisible network of people across the world who do understand.

Other People Feel That Too — Chronic Illness and the Holidays

  1. Missing out on fun and events to rest and take care of myself
  2. Navigating the dreaded “how are you?” or “what are you up to?” questions from family and friends
  3. Dealing with the judgmental reactions of others when I need to make accommodations for my health (turning down the lights, opening the windows, dietary restrictions, etc.)
  4. Worrying I will have a flare-up and knowing how hard it will be
  5. Having to explain to family members why I’m not feeling well
  6. Responding to unsolicited advice
  7. Managing the expectations of others
  8. Being misunderstood and judged by family
  9. Explaining the unpredictability and irregularity of my symptoms to people who just don’t “get it” — helping them to understand why sometimes I am “OK” and sometimes I am not
  10. Keeping my nervous system calm and grounded when others’ energies are swirling around me
  11. Disappointing family by not being able to do the things I used to be able to do
  12. Missing out on holiday events because of a flare-up or bad migraine attack
  13. Dealing with family members who don’t understand or respect why I need to take breaks or rest
  14. Feeling pressure to match the stereotype of partying on New Year’s Eve and knowing my body cannot handle that right now
  15. Feeling FOMO and overstimulation at the same time
  16. Handling the way social anxiety manifests in my body
  17. Not being able to make it to all of the things I want to attend
  18. Explaining to people that most of my days have both good and bad moments, and that both are legitimate
  19. Answering questions from family at Christmas about my health
  20. People judging the legitimacy of my pain when I do show up
  21. Feeling like I’m a drain on my family and friends because I am sick
  22. Not making it to special occasions
  23. Pacing myself for events
  24. Wondering if people will think I am “faking it” because I can hide my symptoms so well
  25. Feeling like I am a burden to those around me
  26. A flare-up striking at the wrong time and missing time with family and friends
  27. Feeling out of it and not like myself with family when I have to take extra medication
  28. Having to explain why I need to lay down or take breaks in the middle of events
  29. Managing anxiety about extended periods of time out of the house
  30. People pressuring me to drink alcohol at parties when I can’t (or choose not to) because of my health
  31. Answering questions about health, school or work
  32. Having a health crisis spurred by trying to do too much
  33. Getting a flare-up while traveling or having something happen on the airplane
  34. Anxiety about when (or what) the next attack of sickness will be
  35. Family tension that kicks up my pain
  36. Lowering unrealistic expectations I place on myself
  37. Advocating for my needs when it is uncomfortable to do so
  38. Accepting there is a difference between how much I can push myself and how much I should push myself
  39. Being able to show up for the people I love in the way I want to
  40. How to manage an attack when I am not at home
  41. Getting sick on a long car ride and being trapped
  42. Questions about my health from relatives, how to answer when their inquiries as to why I’m not “better yet”
  43. Sticking to dietary protocols during events
  44. Feeling like I am taking too much medication
  45. Handling sensory overload from crowds, bright lights and music
  46. Comparing what I can do to what others can do
  47. Imposing unrealistic expectations on myself just because it is “the holidays”
  48. People assuming I’m not trying hard enough to get well because I’m still sick
  49. Explaining to friends back home that I’m not up to seeing them
  50. Feeling like I am not enough

It’s hard when the most wonderful time of the year is also filled with pain and brain fog and fatigue. May this list provide you with some comfort and reassurance that you are not alone in your struggles. As much as you can, give yourself the gift of self-compassion, guilt-free rest and acceptance of the things in this moment that you cannot change.

Originally published: December 18, 2019
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