What I've Learned About the Holidays Since My Chronic Illness Diagnosis

Holidays are difficult for almost anyone, especially if you have a chronic illness. While time with families can be a joyous occasion, to those with chronic illnesses it can be a time when expectations are placed on us to act like our old “healthy selves.” There are pressures to go out and do things with family and friends, to feel the joy of the season, to cook, to travel, to buy and wrap gifts, to be present. To those who live with chronic pain, when getting out of bed is hard enough, the holidays can be a nightmare.

This is my third Christmas living with my chronic illness. I won’t tell you it gets easier. If you live with a chronic and progressive illness, you will know that may not be true. I will tell you some things I have learned since first experiencing symptoms and getting diagnosed.

Self-care is not selfish. Living with a chronic illness can be exhausting and draining, emotionally and physically. During the holidays in the past I have felt I need to put on a front, to act like I am not in pain, that I should participate in every Christmas activity. That’s not true. Some days I really need a lot of self-care, and it’s not possible to do everything.

I cannot please everyone. It seems like no matter what the situation is, there will always be someone unhappy. Over the Thanksgiving holiday, I had someone make several comments about me wanting to go home and go to bed early (7:30 p.m.). I let it bother me for a couple of days, yet I still left. I knew I had hit a wall and was about to 1) break down or 2) not be able to participate in spending time with the family for the rest of the week. I didn’t want to do that so I decided to make a hard decision, leave, and go home and take care of myself.

It is OK to grieve. Holidays now can be a reminder of the person I was before I was diagnosed and after I was diagnosed. Sometimes I can fall in the trap of comparison, which never makes me feel better. It is more than OK to feel my feelings and to grieve the person I was before.

Come prepared and have an exit plan. As I mentioned before, having that exit plan was essential to my well-being at that moment. Did it make someone mad? Yes, but did it help me and help sustain me for the rest of the holiday? You bet it did. I also learned to come prepared on a day I had been out of the house for eight hours without my heating pad or medications. I came prepared from then on and carried my medications in a bag, with my heating pad, headphones, a book and anything else I needed. There have been times I needed to take breaks, and just be by myself for a bit.

Be gentle with yourself. Holidays are hard enough without beating yourself up. I have slowly on this journey gone from being my biggest critic to being my biggest advocate. This journey has had many ups, downs and learning lessons. Good luck to you and happy holidays!

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