4 Things That Improve My Mental Health With AS
Living with AS means dealing with all sorts of complex emotions — when you're not completely exhausted, that is. I would say that in the beginning of my diagnosis I totally had no idea how to comprehend my reality. Like, we're talking random bouts of crying on the subway and vacillating from, "This is literally no biggie, get over yourself," to "Oh my god, one day I won't be able to do anything I love."
The roller coaster is real. No matter how much perspective, rationale, logic, or pragmatism you apply to having an autoimmune disease there's still some element of "I'm not in control of my body." I suppose no one really is — but having back pain, hip pain, gut issues, psoriasis, exhaustion, and stiffness to the point of canceling on friends and giving up activities you love is a lame and daily reminder.
Over the past years of dealing with AS, though, I've learned to find a way to come to peace with my body and the way that I exist as a person living with chronic illness.
When I first was diagnosed with AS, I started journaling a lot. It was almost as though I were writing letters to my body. I wanted it to know that I loved it and cared for it, and I suppose, in a way, writing about my illness meant taking control over it. It stopped being a "problem" and started to be something I would "work" with through words. I'd also take notes on symptoms and triggers during the flare-ups. It helped to be able to get my feelings onto the page (which has been proven to be beneficial to people with chronic illness).
It became clear to me really fast that being sedentary is the enemy of the way AS plays out in my body. I worked out in my early twenties, a lot, and loved it. I mostly danced and lifted weights. As I got older, I fell hard out of the routine — and the mindset. I drank, partied, ate poorly, and didn't sleep well — and part of me always felt like I "gave" myself AS. The fact is, genetics just don't work that way. Eating and sleeping poorly may have contributed to symptoms, but it didn't "give me" AS.
When I immersed myself in swimming and movement — every. single. day. — my life changed. My AS changed. I started making time for my body. I'd think about getting up every 30 minutes. Morning yoga before work. A bike ride. Swimming at night (I realize being in NYC I have had more access to pools). Dancing with tutorials on YouTube. If I couldn't do a move, I'd modify. It is about being gentle and slow and mindful — and showing up every single day to my body. Being movement-mindful every single day has really helped me.
I realize that this sounds extremely simple, privileged and even a bit "woo-woo" but gratitude has helped me get a sense of myself when times get tough. I try to think of or acknowledge a few things that I do have, that I'm lucky to be able to do, or situations and circumstances that are beneficial to me and my quality of life. I found that my post-diagnosis self-pity just wasn't working, nor was being angry. I had to find acceptance and see things for what they are what they're not. Rerouting my language ("my body doesn't work" became "I manage a disease every day") helped. Finding safe spaces to vent helped (hello, this site!), and checking my damn privilege also gave me a sense of control.
I think this is an important one because I'm a writer. Creating something — in whatever way you want — helps take your mind off of the pain, and it also reaffirms your worth, value, creativity, and beauty as a human. Write, make art, decorate a room, make helpful Instagram content — whatever it is, do it. Create. Feel alive. Tap into your mind and heart.
Do you use the word disability to describe your AS?