Always Being "On" With Chronic Illness

Living with chronic illness means constantly feeling like you are tending to something, whether that be your physical body and its very real and always-present pain, or the deluge of medical bills that never seem to stop.

This makes me feel like I'm always "on," always prepping myself for some sort of something, always going-going-going.

But, look, that's life, right? We've all got a lot going on. And yet dealing with an ongoing, uncurable health concern (nevermind during a global pandemic) just makes everything all the more pressing — especially for those chronically ill folks with mental health issues, demanding jobs, or kids

It's never done

I guess, for me, it just feels like "the work" is never done. I am always on — having to consider my health, what I should or should not do if I can go somewhere or do something without paying the physical consequences. And frankly, this often leads me to periods of real shut down — when my mind and body feel like enough is enough. Overstimulated. Overdone. Exhausted.

When I was first diagnosed, I thought about ankylosing spondylitis nonstop. I'd furiously check the Facebook group forums I'd joined. I'd read every news article about the disease or trial medications. I'd watch chronic illness YouTube videos and follow or subscribe to every influencer who talked about health. To say I was informed would be an overstatement; I was obsessed, compelled by some need to understand and to have control.

And yet, while I may have more knowledge than others (and hey, even more than a few doctors, it seemed), I was not in control. I was keeping myself in a state of worry and panic, always primed and ready to jump. To worry. To keep me in a chronic illness spiral. Over time, I realized that having ankylosing spondylitis gave me enough to worry about; I didn't need to add to my list of woes by keeping myself always "on."

Here's what I realized I could do instead:

• Know when to call it quits on research: There comes a point in chronic illness self-education and awareness when you need to give yourself a rest. Constantly thinking about it means it runs my life. A healthy separation is good for everything.
• Know how to acknowledge the disease: Instead of always thinking of my disease as a representation of my limitations and obstacles, I think of it as just an element that needs to be planned for and accommodated here and there.  I try not to let myself spiral into "what ifs" or "this isn't fair" too often.
• Make time to grieve and feel badly, and then move on: I am a sensitive person. If I think about AS all the time, I will think no doubt constantly be thinking about what my future could look like, the medical bills I've been wracking up, and the pain I'm always in. This doesn't leave room for joy or peace. So I let myself have times of grief and then I move the hell on.