How to Survive the Holidays with Lupus

The winter holidays conjure images of snowmen and candy canes, presents wrapped under a tree or beside a Menorah, and plates piled high with frosted sugar cookies. Unfortunately for us lupus patients, much of what happens in our bodies during the holidays is unseen and far less jolly. Colder weather means joint pain. Sugar cookies and candy can raise our blood sugar levels if we’re on steroids. And buying presents for our friends and family members stretches our already limited energy. When you have lupus, the holidays can often seem more stressful than cheerful.

Surviving the holidays

My first Christmas with lupus passed in a blur of doctors’ appointments, brain fog, and crippling fatigue. I didn’t buy presents for a single person. I was barely able to drag myself onto a plane and fly home from college to visit my family. I propped myself up at the dinner table during Christmas dinner, then excused myself early to curl up in bed and cry because my fatigue was so intense.

Fortunately, as I learned how to manage my disease and fatigue levels, the holidays started to become a bit easier. Here are some tips I’ve learned over the years to make holidays with lupus a bit more merry:

Just say no

Give yourself permission to do the bare minimum. If you know that cooking all day will leave you exhausted and in pain, “nominate” another family member to host Christmas dinner. If you must host, use paper plates and make it a potluck. Remember that traditions, like those annoying icicles on your car, are meant to be broken.

Buy gifts in advance

I tend to buy Christmas gifts for my family throughout the year rather than in the months before Christmas. When I see a necklace my mother might like or a book my boyfriend would enjoy, I buy them, then tuck them into a box on the top shelf of my closet.

I also do a lot of my shopping virtually. These days, you can do all your holiday shopping from your bed while sipping eggnog. Like Santa Claus, Amazon knows where you live.

It's also ok to give gift cards or even no gifts at all.

Remember you’re not alone

Sometimes, despite being surrounded by family, lupus still makes me feel like I’m completely alone in the world. There are times when I think I must be the only person my age who feels like they’re trapped in an eighty-year-old’s body. But reaching out to other chronically ill people has helped me see that I’m not the only one who’s young and disabled.

If you’re reading this, you’re not alone. You aren’t the only one who was too exhausted to buy gifts this year. You’re not the only one whose house still has jack-o-lanterns and scarecrows you didn’t get around to putting away. You’re not the only one who needs to sit down when everyone else is standing or eat some food before dinner starts. You’re not the only one who listens to friends and family complain about work or taxes or keeping up with the housekeeping and wishes you had normal problems.

The true reason for the season

This holiday season, remember to connect with other chronically ill friends, whether in person or online. Behind all the ornaments and tinsel, connecting with those we love and who understand us most is the true reason for the season.