In the ICU With OCD: Caregiving With a Mental Illness

In the ICU With OCD: Caregiving With a Mental Illness
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Five years ago, every change in my health status or that of a loved one had the potential to become a catastrophe in my mind. Learning that a loved one was unwell used to send me into a weeks-long obsessive panic. I would get freaked out by what I didn’t know about their condition, do some research, become more freaked out, and repeat until my brain eventually released me.

When anything in my own body felt off, my brain would start on the same course. The panic often amplified whatever symptoms I thought I was experiencing, and I would fixate on any change from homeostasis. I would listen to my own heartbeat until mounting anxiety made it skip, affirming my fear that I had a heart problem. Cue a panic attack — the tight-chested, lightheaded symptoms that were the final confirmation of my perceived imminent doom.

The feedback loop was torturous.

I’ve talked about anxiety before, but the full story is that I have obsessive-compulsive disorder. That is why I refused to turn to Dr. Google when my mom’s mysterious symptoms started precipitating into an actual diagnosis. Right around the time my mom, Holly, was diagnosed with IPF, my mental health was at its absolute worst. I would not have been able to handle the truth.

I received my OCD diagnosis and started learning how to manage it in early 2018. I had a year of therapy under my belt when my mom’s health rapidly declined.

My mom’s hospitalization was the ultimate test to see how well I could handle health-related obsessions. When I showed up at the University of California, San Francisco on the morning of Jan. 1, 2019, I entered the Thunderdome. 

I walked out of the hospital that first evening feeling like I could handle it, even though my mom was deathly ill. Over the coming months, I would put all my strategies to the test to fight obsessive thoughts. Most importantly, I would commit myself to look for evidence.

My therapist calls OCD “the doubting disease.” It causes us to doubt things we know are true, to dismiss logic and facts even when we know they’re truer than our thoughts. It causes us to check and recheck things we should be certain of. The OCD brain tells us its version of the truth even when evidence of the contrary is right in front of us.

For example, having my keys in my hand while inside of a pocket is not proof enough that I will not lock them in my car. I still have to pull them out and see them before I close the door. And yes, I’ll probably check my purse or pocket for them once or twice before I get to where I’m going. 

I especially didn’t want my brain to get stuck in a cycle of exploring catastrophic possible futures when my mom was in the ICU. The present reality was scary enough. To stop obsessive thoughts before they started, I was always searching for evidence that things would be fine.

I wrote down every positive change in my mom’s health status. I made notes when doctors delivered updates. I spent the whole day in her room for weeks on end so that I could see for myself that she wasn’t dying. My mom was very sick, but she was still alive, and she was improving in little ways each day. Evidence.

I also continued my routine of journaling and walked pretty much everywhere as a way to loosen the grip of stress. I paid attention to when my brain was telling me the stress was too much. Instead of fixating on the anxious feelings and physical symptoms — previously, I would have been sucked into the whirlpool of obsession about my own health — I learned how to divert my attention. 

It felt amazing to handle the most unpredictable and scary time of my life without drowning in obsessive delusions. I’m sure I would have fared worse if my mom had stayed as sick as she was when she was first admitted to the ICU. I know that if the scales had tipped the other way, I would have been a wreck. But who wouldn’t? I don’t think that OCD would have claimed me in the way that it once would have.

I worked hard to get to a place where my life isn’t often disrupted by obsessive thoughts. It’s not perfect, but I have a pretty healthy relationship with the disordered part of my brain these days. It even serves me well sometimes. After all, obsessing about following the Ten Commandments of Lung Transplant helped me keep my mom safe and healthy.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.
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Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.

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