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9 Tips for Enjoying the Holidays When You Live With Primary Immunodeficiency

Does the thought of the upcoming holidays fill you with more dread than joy? Even for perfectly healthy people the holidays can be stressful, but for those of us who have the added stress of living in bodies that can be quite uncooperative, we have additional worries about our health. Can we get through the season without getting sick? Who will do everything if we do? Truth is, our plans don’t always pan out, so here are my tips for getting enjoyment out of the season almost always anyway.

1. Do as little as possible. I mean it! If someone else in your family wants to have the holidays at their house – let them. If someone offers to do some or all of the cooking or baking, say yes! I am saying this because for years I had both sides of the family at our house for Christmas Eve. Despite doing all I can to keep it simple and stay well, on a number of years I was sick and tried to pull off the holiday anyway. My low point was when my doctor told me I really risked my health trying to save Christmas. The realization that something bad came close to happening to me all because I didn’t want to ruin Christmas made me accept it was time for a change. Being a guest rather than a host makes so much more sense for me and probably does for many of you as well. It’s so much less pressure that way. If your holiday is just your immediate family, try to lighten your load by purchasing food already cooked, or by enlisting everyone to help out.

woman posing with the grinch

2. You don’t need to decorate! OK, if your kids are little or it brings you much joy, go ahead and decorate a little, but there is no need to turn your house into a Christmas village. Remember everything you take out must also be put away. It’s a lot of work for anyone with chronic illness. I used to have so many decorations, but after we lost them all in Super Storm Sandy I didn’t replace them. We had so many things that actually needed to be replaced – like electricity and heat, furniture and household items – that it changed my whole perspective. I don’t really need decorations. In fact, owning them just makes more work for me when what I actually need is more rest. What I have now are two live potted Christmas trees that I can enjoy all year round. I don’t have to move them or change a thing!

3. Try to enjoy the season so your excitement and happiness isn’t tied to one day or moment. Living with primary immunodeficiency means you can and will sometimes get sick and miss holidays or other much anticipated events. If you enjoy the season, a missed party or event doesn’t sting quite as much. There are many ways to enjoy the season. Prepare some of your favorite foods throughout the season, watch holiday movies, go for a ride and look at the holiday lights, wear festive clothes or pajamas.

4. Find things you can enjoy even if you are sick or in the hospital. Being stuck at home or in the hospital for the holiday stinks but will happen sometimes. Do you have a favorite holiday book or DVD? Holiday crafts you’re able to do? I always like to have things I can enjoy almost no matter what around just in case.

5. Limit your exposure to crowds before an important event. This might mean only accepting the most important invitations so you don’t get sick before the big day. Or doing your shopping online instead of going into stores. Remember, the more people in a room the higher the odds are that someone will have something you can catch. Try to keep the odds ever in your favor that you will be feeling well for the holiday!

6. Pace yourself and prepare as many things as you can before the holiday or event. This has made it possible for me to pull off a holiday even under less than ideal conditions because I had already done much of the work while I was feeling up to it. Wrap presents as you purchase them, write your Christmas cards early. You will almost always be glad you did.

woman standing in front of a christmas tree

7. Even though you will be breaking your routines, remember to eat well, get plenty of sleep and get your treatments on time. I don’t delay my IG infusions for any reason. I either take it with me or stay home. Being consistent about everything you can control really helps. I also pack all my medications for the day out the night before so I don’t forget anything while in a rush.

8. Determine your own limitations based on how you are feeling and according to what is most meaningful to you. Don’t allow yourself to be pressured into doing more or being exposed to more than you are comfortable with. And it’s OK if no one understands. When you have a rare disease not everyone will understand but you still need to take care of your own health.

9. The holidays are about love and hope and giving. It’s not about being perfect or having everything go as planned. Stay focused on the meaning of the holiday and you are sure to get more out of it.

Stay well and I hope you all have a great holiday season and a happy and healthy New Year!

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