Staying alive is my job.
Taking pills, managing side effects and flares, figuring out the best mix of treatments for each day’s changing symptoms. Playing medical mystery with my own body every 12 hours.
This is my life’s work.
Managing doctor conference calls and meetings each week to negotiate the most effective care to keep me alive. Navigating the ever changing healthcare system, using my body as a bargaining chip for its own survival through treatments. I am my own case manager.
This is my job.
Juggling appeals for medication denials, researching scientific journals for the latest findings for a disease I know more about than all my doctors put together, diagnosing myself before the M.D. puts a clinical stamp of approval on my work.
This is my work.
Speaking for myself and consequently every person whose suffering is more a result of the system and society than the disease. Making my story heard so people who can’t share theirs are heard too.
This is my job.
Waking up every day and finding a reason to keep fighting amid the constant changes of an unpredictable, unreliable body that demands all decisions made around its needs.
This is my life.
A job I didn’t ask for, can never quit, and will never get paid for. A job I do on top of surviving poverty, paying bills, navigating the public assistance programs I don’t want to rely on while watching from the sidelines as others achieve dreams they have the health to pursue without barrier.
This is my all-consuming career.
Doing all of this with never ending pain and fatigue and depression from living with a progressive disease. Finding occasional happiness and joy even with constant side effects, progressively worsening symptoms, and a future out of my control. Taking advantage of the good days, wanting to live-and-not-just-survive; always overdoing the days I feel “good” even though I know taking advantage of those days means a really sick recovery day the day(s) after. Finding a way to keep moving forward even though my workload is determined by each day’s changing body. I haven’t even mentioned how to have a social life, shop for groceries & build a family outside of this work.
Representing others just by speaking.
Somehow living on less than minimum wage (or worse), yet somehow knowing my life has value.
Sacrificing my body to current treatments for the benefit of generations of sick people I will never meet, whose bodies will be healthier than mine because of all the medications I proved were not perfect by my living and eventual dying. Sacrificial incurability: because I lived and tried these medications, they will have better ones.
The times I collapse on the couch for days, watching Netflix without ceasing, the days I’ve called out sick from the workload that never ends and the body that never stops needing. Those are the days I physically and mentally need a vacation even though I’m never off the clock, because my body is my job and if I don’t do my job then the job won’t get done. Survival is dependent upon my showing up for work 24/7/365 for the rest of my life. So those Netflix days – my vacation/sick days – are often my only respite.
So if you call chronically ill people lazy, my life is what you are calling lazy.
And if my life is what lazy is, then lazy must really mean I’m invincible.
Lazy must mean I’m stronger than most humans will ever need to be to survive.
Lazy must mean I’m dedicated to a life of work I didn’t choose just to maintain a baseline of less-than-average health.
Lazy must mean I’m studying medicine by proxy without promise of a medical degree and lazy must mean I’m faced with living my life in the face of stigma and oppression with almost every breath even though I was born this way.
If my life is what you mean when you say lazy, I’ll take the title proudly. Where’s my t-shirt?
If you call chronically ill people fakers, then my life is what living a fake life must look like.
Faking it must mean I manage to make it look so good.
Faking it must mean I leave my work in the “office” (home) because I’m a professional (I’ve been doing this a while).
Faking it must mean I’m protecting you from the truth of what you might deal with next week because I don’t want you to know how truly awful it is underneath my facade – you might not be able to handle the truth.
Faking it must mean I’m taking a break from my 24/7/365 job of survival when I choose to pretend to be “off the clock” for a little while.
Faking it must mean my life is so undeniably hard that you can’t imagine how anyone would make living in an incurable body look so damn easy…like it’s my job.
So if you call me a faker, I’ll own that title proudly too.
I just have one more thing to say.
Thank you, on behalf of all the Lazy Fakers. We’re so grateful to be seen.
If you’re interested in helping the lazy faker who wrote this, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. It’ll allow me to put my lazy to work in areas other than constantly counting pennies.