Staying Sane and Managing AS Facebook Group Usage
When I tell you it's easy to get obsessed with ankylosing spondylitis Facebook groups, I say this out of real experience. When I was first diagnosed, I read every. single. post. in at least two or three Facebook groups. The details and miseries would flood my mind as carousel images: wheelchairs, hospital beds, infusions, blood, back surgery, lost jobs, failed marriages, declined applications for governmental assistance, sexless relationships, isolation from friends, conditions (like lupus!) induced by medication. Would I die from lupus? Would I be wheelchair-bound forever? Would I lose my friends?
How would I recalibrate my identity as different (or dis-abled)? How would I survive without insurance? Would I eventually become a miserable old woman doomed to live a lonely life? Would I have to give up my passion? Was I really just dying without knowing it?
I became very obsessive
I'm a poet and a writer, so my imagination is always going a thousand miles per hour. I am fiercely and toxically empathic, which means I feel others' pain and I have a hard time separating it from my own. I feel (and fear!) I can, in some way, create realities with the sheer force of my thoughts. In short, the mind is a powerful thing-—but thoughts are not things, and obsessing on potential losses, darknesses, and tragedies is no way to live.
I first had to stop stalking the Facebook posts, I decided. It was four months post-diagnosis. I was sitting at work, mindlessly scrolling-—seeing everyone understandably venting (because where else could they, really?) when I realized I needed to stop. It was stealing my mental space, my energy, and it was kicking up my cortisol levels like crazy.
Everyone's experience is different
What one patient experiences is not an indicator of my future, I told myself. And what one person gains from medication or a lifestyle change may not work for me.
More so, living in the space of "what if" and "impending apocalypse" means you're not living in the present. You're not being grateful for what you do have.
One therapist, Emma Gray, who has an ASMR channel on YouTube talks a lot of things like negative thinking, overreacting, and health concern versus health anxiety. She says that people often overestimate a problem while underestimating their ability to cope. I think about this a lot these days.
I will take the good and the bad
There will be hard times and bad days. There will be good days and wins. And I have to be realistic, pragmatic, and action-based without devolving into catastrophic thinking.
But I can--we all can--handle more than we think. The thing is, we can't spoonfeed ourselves a constant source of worry, anxiety, and comparison. Turn to the community, of course, but with moderation and perspective. You can be prepared and informed without living in a space of total darkness and despair.
I have to remind myself of this as a writer, community moderator for our AS support page, and as a patient. It's easy to falter, but just remind yourself: Be present. You can only control so much. Find balance.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?