by D KOBAYASHI
My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help. 

I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-ok as I pretend to be Normal. I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be Normal. I dream of waking up one day – and all of this struggling will just *poof* be over.

If you’ve ever experienced pain so long and so severe, that you prayed you’d die, you know what I’m talking about.

It’s been a ten year string for me. And despite how I focus all my energy on being Well, the physical abuse and mental stress I inflict on my body while trying to “appear well,” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” with my job!

Normals don’t know what to do with Chronics. They don’t get it – unless they GET it. We appear lazy, whiny, unreliable, boring, insincere, anxious complainers. I’ll freely admit my former self didn’t understand. 

There’s no kicking CM, RA, etc and booting it our of your life. There’s no beating it. No remission. No cure.

So…we are just … 1) boring and 2) annoying and 3) weird.

I think the only way to explain Chronic to a Normal is in analogies… Imagine having the flu everyday of your life…go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s ALL FLU. Then imagine having to climb Mt Everest with that Flu. Everyday. Mt Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to a doctor appointment (where they give you the GREAT news that they can MANAGE your illness, but there is no CURE. And the meds they want you to take bring on side effects often worse than the illnesses themselves).

Freaks. Just Freaks. Circus Folk. Half alive, living Half-Lives. A lump. A burden. A shadow of my former self, a shadow of a mother, a shadow of a wife, a shadow of a friend, Yeah, staying home is great fun – staying home, being disabled – it’s the job I dreamed of having forever.

I’m good at my job. I’m great at my job. I hate my job. I hate how it robs our family. Just robs us of everything, every day with no shame or remorse.

Sometimes…sometimes, I am so done. I want to quit my job.

#MAM 2017

#MyBeautifulMigraine

#ChronicMigraine

#InvisibleIllness