When Nothing Feels the Same
We’re back in a holiday season where we’re spending more time evaluating what is safe and what isn’t. Where we have to consider the consequences of every choice we make and hope that others are doing their best on our behalf. It’s been exhausting, truly.
No matter what choices we make as individuals with immune deficiencies, we’re left feeling like maybe it wasn’t the correct one. We choose safety, we’re told we live in fear. We choose to take measured risks, we’re told we’re not careful enough. It can feel impossible.
Whatever your plans this holiday season, we urge you to seek advice from your own medical team. They’ll know your situation best and usually have great advice about just how careful you need to be. I wanted to take this opportunity to share how I’ve navigated that advice in the past and how what I learned from the experience informs my decision-making now.
In 2009, my mother was the full-time caregiver for my grandmother. Late that fall, in the course of caring for my grandmother, she contracted C. diff. I was in the midst of trying to figure out autoimmune complications of CVID, and was very fragile, health-wise. I called my immunologist and we discussed a plan – which involved not going home for the holidays. I was heartbroken, as I knew my grandmother did not have many holidays left, and was so angry at CVID and my body.
That Christmas, I went home with my boyfriend at the time. I participated in his family traditions while longing for my own. I had not realized how isolating it would feel. It is so hard when you want to be somewhere with the people you love and you can’t.
In the end, it was the best decision. It turns out the strain of C. diff my mom had was especially difficult to treat. She spent months trying to clear the infection. In hindsight, there is very little I would change, except trying to include some of my own beloved traditions instead of simply going with the flow. I also learned what traditions were most important to me, and have brought those into my home and my way of celebrating Christmas with my husband and son.
I still grieved not being there, and that’s totally normal. In fact, I’d be shocked if people don’t feel an immense amount of grief right now. Everyone I know, PI or not, is feeling the weight of the pandemic. Try to focus on the meaningful things you’re able to do. Cook (or takeout) a nice holiday dinner. Watch a beautiful holiday service online. (Or a silly Hallmark movie!) Find a new tradition. Use caution when gathering with family and friends, and don’t be afraid to enforce boundaries that make you feel more safe. Take good care of yourselves and have a very happy holiday.
