Surviving Holidays with PANS

The holidays can be a difficult time for PANS patients and families.
The holidays can be a difficult time for PANS patients and families.

Call me the Grinch, but for people with PANS, the holidays aren’t necessarily “the most wonderful time of the year.” For me, the season brings back painful memories of when I was sicker. Plus, symptoms can be more pronounced when contrasted with holiday activities, family gatherings, and Christmas parties.

I love my family and friends, but there are times when I feel like the PANDAS bear is the elephant in the room during visits. Invariably, I end up explaining my illness at every get-together, because my symptoms are forever changing. One time, it’s chorea. Another, it’s inappropriately saying “butt” in the middle of conversations (a vocal tic). On a different occasion, it’s difficulty walking. Understandably, I think it’s hard for some to comprehend how unpredictable and all-consuming PANS can be—especially when I don’t always look very “sick.”

My problem is that I get annoyed when no one bothers to ask how I’m doing, because PANS has been such an enormous part of my life. At the same time, I get annoyed when someone does ask, because despite what this blog may lead you to believe, I’d usually rather talk about college or writing projects or running rather than my challenges. I’m so much more than my illness, and I don’t want to just be the person with “the disease.” Of course, the people who ask almost always genuinely care, so I do appreciate the gesture.

Another difficulty with holidays and PANS is the sensory overload that can so easily happen. Last Christmas, I got so overwhelmed that I had to remove myself from the festivities and take a nap to recharge. My family isn’t that loud, but when you have the sensory sensitivities that are so common with PANS, all of the lights and bright colors and conversation and laughter and activity can be overwhelming and too much to process—no matter how much you’re enjoying yourself.

Worst of all, the first time I experienced depression was just days after Christmas in 2006. I’d been having a lovely time with family that holiday, and then depression came on suddenly. (Although I didn’t have the classic onset of OCD to go with it, I wonder if this was the beginning of PANS.) So to this day, I can’t help but feel a piece of that sadness and darkness every holiday season.

Of course, there are times when PANS and Christmas can be a funny combination—as with my notorious Shower Gel Incident in 2007…

I was twelve and in the middle of a horrible flare, and my mom gave me some nice shower gel. I loved the scent. In fact, I loved it so much that I unscrewed the cap and started to drink it right then and there, beneath the tree. Everyone, including me, was shocked. Though amusing, the story is also unnerving, because it shows how impulsive and irrational PANS had turned me. But I’d rather laugh than cry about it!

Nevertheless, this year, I think I’m in the best health since all of this started so long ago. This year, maybe there will be no elephant in the room at family gatherings, because the bear is leaving me alone—and frankly, I’m no longer embarrassed about what happened to me. I wouldn’t quite say I’m 100% symptom-free, but my present symptoms are so mild that I really don’t feel like I’m sick anymore. I don’t know about you, but I think that’s cause for celebration!

I hope that maybe, next year, I won’t be thinking of bad memories or the difficulties of having PANS around the holidays—I’ll be thinking of Christmastime as an anniversary of when I finally got better—as long as this progress lasts… And as long as I don’t drink more shower gel.

So readers, I’d like to hear from you. How do you deal with the difficult combination of PANS and the holidays? How do you handle awkward family encounters related to PANS? Do you have an “amusing” PANS story related to this season? I’d love to hear, so please feel free to leave a comment.

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