Lupus Does Not Take a Vacation

There is never a time I feel more frustrated or trapped by my chronic illness, than during the holidays. Lupus does not take a vacation. Instagram is full of pictures of endless parties, family gatherings, travel and people smiling with boundless energy. But as I approach the holidays, I see more work, extra energy and a low social battery. On Instagram, I hide my pain and fatigue behind smiles and giggles. But as a community, it is important to unmask and share. To understand that you are not alone. It is also important to share tips and tricks to save those spoons or pick up more during the holiday season. 

My Instagram shows a fun, energetic university student with a calendar full of Christmas parties, family dinners, and holiday markets. What you don’t see is my lupus. 

Lupus is… 

• Scheduling chemo and infusions while my friends are out skiing. 

• Lupus means skipping zoo lights because walking outside in the cold triggers joint pain and Rynauds. 

• Lupus means choosing between taking a shower or baking holiday treats because you only have energy for one. 

• Lupus is walking past the dessert table and choosing mocktails so you can keep to your healthy inflammation-reducing diet. 

• Lupus is sleeping on the couch between family events. 

• Lupus is about choices, it's about self-care it's about learning to choose you! 

Do not let your chronic illness stop you. Enjoy the holidays by making simple changes. I focus on activity scheduling and energy conservation. 

• Instead of baking, buy something from the store and arrange it nicely on a Christmas plate. 

• Instead of spending hours showering and curling your hair, plunge and go to hair stylists or have a friend do your hair. 

• Choose to sit instead of standing at a party. 

• Choose to stay late at a party but skip the brunch the next day. 

• Make your friends as a potluck. 

• Hire help or recruit your friends to help with set up and clean up. 

The holidays are about family, not if your hands can properly wrap the presents. It’s about love, not about whether your meals are made from scratch. The holidays for someone with chronic pain are about advocating for yourself to create traditions that you can handle. Lupus may cause challenges, but it does not stop. So, although my vision board for 2025 may not look like others with goals of running marathons or hiking mountains. But it is covered in future travel and adventures (on my terms) advocacy and self-care. 

Wishing you all an amazing 2025 with endless spoons and more happiness than you can handle.