Patient Blogs | Lupus
With Lupus, Holidays Are a Balance Between What I Want to Do and What I Can Do
photo of teleconferencing during holiday season

I absolutely love the holidays. I am a sucker for the music, decorations, baking, all of it. Unfortunately, it’s also a time where my body is prone to flares and has a hard time keeping up with everything I want to do. When living with lupus, I’m constantly trying to balance what I want to do and what I actually can do.

This is a time of year that I must practice some serious self-control with what I commit to, especially since the activities I enjoy like ice skating, parties, and shopping are often hard on my body. I try to figure out how I can adapt these activities to make them more accessible and work for my needs. This usually means prioritizing what events and traditions are most important to me, spacing out the amount I do each day, and definitely doing my shopping online.

The COVID-19 pandemic has obviously changed my holiday plans quite a bit. My girlfriend and I are unable to travel, so for the second year in a row, our Christmas will be the two of us. We are both very close with our families, so it’s hard to not be with them for the holidays again.

I am grateful that our families have not questioned our choices or boundaries and know this is the right decision for all of our safety. I do get frustrated seeing others proceed with life as if we are no longer in a pandemic and let myself have my moments of disappointment and anger that we are still in a situation where it’s unsafe to be with family. During this time, we have thankfully found ways to lean into the holiday spirit, connect with loved ones from afar, incorporate old traditions, and make new ones of our own.

Every year, my dad and I watch The Santa Clause together. Last year, we watched it through the GroupWatch feature on Disney+ while on FaceTime. Though I wish we could’ve been cuddled up on the couch in person, I still felt like we were watching together.

FaceTime also helped us continue a tradition in my girlfriend’s family -- the annual reading of a Christmas book on Christmas Eve. Last year, we all gathered virtually to listen to my girlfriend’s dad read a story. It felt really special to still be able to do these things that are so important to us.

Since we spend most of our time at home and won’t be attending parties this year (my body thanks me), I am leaning hard into our decor. We got our Christmas tree the day after Thanksgiving and decorated our apartment immediately. Does it look like Christmas exploded? Yes. Do I drink my coffee out of a snowman mug every day? Yes. Do I put on holiday music whenever I get the chance? Yes, and it makes me extremely happy.

I don’t want people to pity my holiday situation in the pandemic. The way I look at it -- I don’t have a choice but to celebrate in the way we are. I feel so fortunate to feel fulfilled and enjoy the holiday season even in these circumstances.

Last year allowed me to give my body a break in a time when it rarely gets one and it truly felt restorative. I look forward to celebrating again in this new way, making our families’ favorite recipes, and being on FaceTime with them as we open presents.

 

 

Photo Credit: Lorado / E+ via Getty Images

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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