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When Chronic Illness Turns You Into a Spectator of Your Own Life

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I sit in the parking lot of my local pharmacy, fingers lightly clasped around the steering wheel like a loose forkful of pasta. My breathing is quick but not panicked. My heart follows suit — ba-dum, ba-dum-dum, ba-dum. There’s music coming from the radio but you couldn’t pay me to tell you what was playing… I have no idea. I guess numbness is the best way to describe what I’m feeling. My mind won’t stop racing or asking questions: Wasn’t I here two days ago? Didn’t I talk with a pharmacist this morning? Did I remember to call my surgeon? What else do I need to pick up so I can conserve energy and not make two trips? How long of a nap should I take to get this energy back?

Maybe you can relate. 

I’ve been a chronic illness and rare disease patient for 19 years, and one thing I’ve learned is there are two modes of existence — you’re either in an acute, heightened state (this looks like new symptoms, a hospital stay, or a surgery) or a stable, routine state (this looks like your typical everyday management of symptoms with no new issues cropping up). For the past three months, I’ve been trapped in a heightened state. The best way I can describe it is that it’s like living in a house with an elevator but no windows. I somehow get from floor to floor, but I don’t actually remember the ride and lack complete awareness as to what’s happening outside those walls.

Chronic illness will do this to you. At its core, being a “professional patient” can be a really mundane existence — medication, appointments, care coordination, rest, and repeat. But how do you break out of it? Actually, rewind. Let’s start here: How do you pinpoint if that’s actually what you’re experiencing?

Here are some questions I’ve been asking myself lately and a few Mighty stories I’d recommend to help you process what you’re going through:

Am I in tune with my feelings or do I feel numb? 

Do I feel any sense of joy on a daily, weekly, or monthly basis? 

What visceral reaction do I have to any mention of the word “future”? Does it scare me or excite me?

Am I living on autopilot? Do I remember what I’m doing over the course of a day or do the hours blend together?

What kinds of conversations am I having with the people around me? Am I isolating or am I actively engaging with the people in my life?

Perhaps, like me, you’re asking yourself, “But why does this matter?” Good question.

The short answer is that it might not matter if you’re content with your life. But if you feel there’s a part of you that’s missing right now, keying into whether you’re in survival or thrive mode (honestly, not even thriving, more like staying present and in the moment) can help.

It’s easy — and sometimes necessary — to let chronic health conditions consume your time, your energy, and even your identity. That’s the reality of what makes them chronic, or by definition: persisting for a long time or constantly recurring; difficult to eradicate. But feeling constantly numb isn’t the norm operating speed of people who are able-bodied and it’s so tough to remember that sometimes. Non-disabled people who live without health conditions feel joy, feel “with it”, feel like active participants in the day-to-day. So why can’t we? 

I am ridiculously tired of watching my life like it’s a movie. I want to live it — even if chronic illness makes it hard. I deserve to be the main character and I’m trying so damn hard to get there one day soon. And for what it’s worth, I want that for you too.

Getty image by ljubaphoto

Originally published: May 24, 2022
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