October is OCD awareness month and I’ve hesitated to share our experience but after discussion with Anya, we felt it was the right thing to do. Our family is emerging from a war zone and it has been an experience we would never have imagined.
On June 28 we went to church and came home uneventfully. I don’t remember much about it. But by that evening, the Anya we knew had disappeared - unrecognizably consumed by an unfamiliar monster we now identify as extreme OCD.
During the two months that followed, our family was completely paralyzed by OCD (suddenly triggered by PANDAS, an autoimmune inflammatory reaction to a Strep virus). She couldn’t go outside (except to play tennis in the mornings, a discrepancy which we never could explain or understand but for which I daily gave thanks). She couldn’t look outside. She spent most of her time in the basement with constant white noise playing in the headphones in her ears. She could barely be upstairs - and definitely not if the blinds were open. She couldn’t handle even the changing light or shifting shadows through the closed blinds. She couldn’t eat and was throwing up. She would lay on the floor, curled in a ball, screaming and crying, often needing help even to get up. She had constant vivid dreams, often nightmares, and I spent more than one night sleeping with her trying to help her get some rest. She was exercising as a compulsion. She lost more than 7 lbs. in less than three weeks and at one point I was feeding her (yes, my 14 year old) just to try to maintain any caloric intake. She experienced auditory and visual hallucinations. She had almost zero short-term memory. She had irrational fears (that she recognized cognitively as irrational but were no less real to her) revolving around weather (or the possibility of weather) and unrealistic damage it might do to the dog, the house, the family. She checked weather at least 30 times (probably closer to 50 times) a day and could always find more apps and websites to check despite my efforts to block and prevent. Life stopped - for all of us. All my summer projects (Ian’s Scholarship, my private SLP practice, lesson planning for the coming year, trips to see family) were abruptly put on hold. Overnight everything revolved around Anya’s perceived dangers and her attempts to shelter from them. Izzi was frightened and always angry. We were stressed, exhausted, terrified, and at a total loss to help her. It was the definition of debilitating. For the entire family.
We began seeing doctors and specialists. We even considered hospitalization - and she was asking us to. Multiple medications were tried with little to no impact (and sometimes negative side effects). Fortunately her pediatrician recognized and mentioned the possibility of PANDAS, which ultimately put us on the path to help. We began counseling for anxiety, though on the first intake visit, the therapist admitted this seemed more like OCD and was extreme for her scope of practice. She suggested a psychiatrist and The OCD and Anxiety Treatment Center. After 4 different intake appointments in less than two weeks, we finally landed in a program where she felt understood. Her situation, though unique, was not foreign or mysterious to them - and they knew how to help.
Now, four months later, after almost 10 weeks of intensive outpatient therapy (3 hours a day five days a week), we mostly have our Anya back. We were even able to spend much of the weekend outside in Logan Canyon and having outdoor family pictures taken in the semi-wind. That would have been unthinkable just less than 4 months ago.
Anya will always have OCD. We hope to be able to gradually wean her from her extremely restrictive diet and hopefully at least some of her current medication. But as hard as this has been for us, it was sudden and abrupt and relatively short-lived compared to many families we’ve met through therapy who have suffered and struggled for years. If the onset hadn’t been so severe, I don’t know that we would have recognized it. She had OCD tendencies before, but we didn’t fully recognize them for what they were, nor would we have recognized this as OCD if PANDAS hadn’t jumped in and stunned us so completely that we, of necessity, scrambled desperately for immediate answers.
OCD is not always so severe, but it is real and mercilessly restrictive for those who suffer. We didn’t understand the beast before but we now know what to look for (and how to move forward) as viral infections may cause future flare-ups in Anya’s case. (PANDAS is different than just OCD, so much of her experience is specifically tinted through that lens. The sudden severity and intensity is not typical of all OCD and viruses, infections, and inflammation do not impact all people with OCD as they can for Anya.)
Anya wants to help others avoid her suffering and recognize signs in order to find help and stop OCD in its early stages. When I asked Anya if we should post, her answer was unequivocal: “Yes. People should know. OCD is not what people think. It’s not just compulsive hand washing. It’s not just needing the pictures to be perfectly straight on the wall. It is those things, but it’s more. It’s more than the stereotypical rituals. It’s like really obsessive, consuming anxiety. Intrusive thoughts that won’t leave you alone. It’s doing mundane things compulsively in a desperate attempt to protect yourself and others and prevent things you have no control over.”
So for those of you who know my An, think of her as one of the variety of faces of OCD. Most of you probably did not know what she’s been dealing with. Remember that: You didn’t know. You couldn’t tell. This is not an attempt to elicit sympathy or attention for her or us as a family. More just a reminder that we usually don’t know what others are silently facing. Have patience. Show love and compassion and kindness. To everyone. Always. Don’t judge. Don’t criticize. Don’t minimize others’ distress or difficulties. And please, do not hesitate to seek help when it’s needed.
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