Things That Get Me Through
I am one year into topical steroid withdrawal. During this time, I have only left my apartment for doctor's appointments and to ease the burden of care on my partner by spending time with my family. Whether at home in New York City or with my family in New Jersey, I'm currently spending all my time in bed or on the couch, draped in a sheet to catch my blood, ooze, and flakes. I've had to push all of my regular hobbies to the side, and because my health started to decline in the midst of the COVID-19 pandemic, I haven't seen any of my friends since 2019.
Immobility and isolation
Periods of immobility and the social isolation that come with them are not new to me. Like most people who go through topical steroid withdrawal, I was already prone to severe eczema flares that would render me incapacitated for days or weeks at a time. As an extrovert, I've had to get creative in order to maintain my sanity.
These are some things that have helped me get through the single hardest year of my life. I hope they can help you, too.
Video games keep my hands and brain busy in a way no other form of entertainment does. There is a level of immersion inherent to gaming that isn't present in media designed for more passive consumption. When I'm playing a video game, I live in its world, not this one, and I am bound by its rules, not my body's. Because of this, gaming is the only activity that can occasionally allow me to tune out the chronic discomfort and forget my body completely — an escape I can't even get in my sleep these days.
Video games also present a unique opportunity to stay connected with your loved ones when you aren't feeling up to socializing in person. Multiplayer games are ideal for this, but handing the controller back and forth while exploring Outer Wilds during the darkest chapter of my health was one of the most emotionally profound experiences my partner and I have ever shared.
I've always been stressed out by the knowledge that stress exacerbates eczema because the vast majority of my stress comes from my eczema in the first place. While there are many wonderful ways to manage stress, including getting enough sleep, and adopting a mindful meditation practice, nothing proactively diffuses stress and inoculates against it like regular and sustained laughter.
The science is with me on this one — it's well documented that laughter reduces stress and improves your mood.
I bought enough pairs to wear them into the bathroom, then change into a fresh pair afterward. Hand washing is hell, and a major exacerbating factor for eczema—those of you with hand eczema know it just does not heal — but gloves help me keep it to an absolute minimum.
At the recommendation of my therapist, I recently started keeping a journal. It's something I've wanted to do for years but was never able to make the time for. Now I have nothing but time, so I have no excuse.
Building the habit during the worst months of TSW was excruciating not only because my hands were so raw it hurt to type but because little stifles the imagination like chronic pain. When your mind isn't free to wander far from your body, your capacity for metaphor is obliterated. For the first two months, I missed more days than I journaled. But like exercising a muscle, I found myself increasingly able to synthesize coherent thoughts through the brain fog over time.
Not every entry is about TSW. Most aren't. Mostly I use my journal as a means of thinking on the page since I still find it so difficult to think in my head. A deep itch can't as easily derail a train of thought when I can re-read it and follow it back to the next logical thought. Every sentence is a roadmap to the next one. I'll write about anything — the books I'm reading, a movie I've just watched, things I'd like to do when I've recovered — and when I read it back, I recognize a sharper, healthier reflection of myself in the words. It's helped me to reclaim my sense of self.
A photo journal
With my partner's help, I've been keeping a second kind of journal, too: a photo journal of my progress. I don't look at this journal, except for side-by-sides she shows me so I can remember where I've been and envision where I'm going. It's easy to underestimate how far you've come when you still have so far to go. But because of this journal, I know that going through it means I will be on the other side of it sooner than I think.
My incredible support network
I buried the lede on this one. Video games, gloves, and comedy are not free, and not everyone has equal access to them. They are luxuries even as they are necessary for survival.
I am only able to afford these things because my full-time employer allows me to work remotely. I can only spend my time distracting myself and seeking out laughter because I live with a partner who works remotely and can take care of the household chores I'm currently unable to do, like shopping for groceries and cooking. The only reason she has been able to care for me without burning out is because I have family who lives nearby and is always happy to take me in for a few weeks at a time. It is only thanks to an abundance of privilege and good fortune that I can afford to suffer from this condition at all.
I think about those who don't have these things
I don't know what happens to the people who suffer through TSW but don't have the privilege of working remotely or don't have loved ones who can help care for them. I think about these people a lot. I know they exist, but I can't imagine how they survive. Maybe because they cannot rest, their skin never heals — it just keeps peeling off, layer after layer, until they disappear completely.
How often do you downplay your eczema to other people?