Breaking The Cycle of Doing Too Much
While there are a lot of people with AS who have learned the hard way that managing a chronic disease means saying no to activities and turning off more often, I meet a lot of people — usually women — who feel the need to do more, to keep up, to be enough. (Hint: You're already enough).
Sidenote: Women are often expected to put their own needs on the back-burner while working, raising kids, cleaning, cooking, and providing emotional support — and that's not a sexist or reductive statement; society is still full of these biases.
I always find myself busy
On a personal level, I am the kind of person who likes to be busy — or at least I used to. I've got a natural drive, but I think some of it is insecurity. If I'm doing always making or generating or being creative, then who am I? AS has changed that for me, in a huge way. I've had to say no to things.
I also feel a pull to provide emotional support to my family (both of my parents also live with chronic diseases) and my friends. I run a magazine and work as a pretty public writer and author, so I feel a need to always be on, to always be available, to always be compassionate to others who reach out to me. After all, if I write about health and wellness — I must be around to talk about it, right?
I'm sure everyone has some version of this. At the office, you have to be on — even through searing pain and brain-numbing fatigue. With the demands of kids and family. Whatever it is that you do, you know how hard it is to balance the shadow of AS with the needs of reality.
And maybe those demands are somewhat self-created in an effort to remain "the same," to not "give in" to the disease. I know most of my validation comes from going, doing, being. Either way, we have to let ourselves get rest. We have to care for ourselves in a deeper way—by being willing to rest, to self-care, to heal.
But it's important to set boundaries
In short, we know to know how to draw a boundary between how much we keep for ourselves and how much we give others, no matter what we feel morally or socially obligated to do. For example, I can't respond to every comment or write back to every single email from a stranger. I want to, but I can't. I can't always go for the extra project because it looks fun and gives me experience, because honestly, it cuts into my self-care time. I can't always be this flawless, on-the-go, ready-at-the-helm version of myself because she isn't really me. Not anymore.
There is certain grief in this, of course — but I have learned to reframe it: Instead of saying no, I get to choose. And I get to be fulfilled and made joyous from the experience of being alive, rather than being "valuable" and "productive" through work and projects and the neverending treadmill. I get to treat myself to rest.
I'd love to hear your version of this sort of conundrum in the comments below!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?