#ChronicIllness: the worst job in the world

dSavannah note: This is another one of them there posts I wrote a while back and am just now publishing. Didn’t do much to it, either. Just added the photo and a few words here and there. And futzed with the formatting, cuz, perfectionism. Please forgive typos. My brain ain’t what it used to be.

I have somehow managed to acquire the worst job ever, and I have held it exclusively for the past three+ years. To tell you just how awful this job is, consider this:

  • It’s 24/7/365. No time off. Ever.
  • No benefits.
  • There is no pay; in fact, I have to spend money! Lots and lots of money!
  • Having fun is a thing of the past.
  • A social life is prohibited. Okay, not prohibited exactly, but strongly discouraged. You ‘pay’ for it if you try to have one. And you never know what the price will be.

The requirements of the job are incredibly demanding, including:

  • Patience of … a really patient thing.
  • Organizational skills.
  • Detail oriented.
  • Communication skills, especially written, but verbal as well, in person and on the phone.
  • Extreme perseverance in the face of immense obstacles, including disbelief and lack of followup.
  • Ability to research and comprehend vast amounts of information in which you have zero training, along with the ability to separate truth from falsehoods.
  • Data gathering, tracking, and analysis; maintain databases; generate reports.
  • Advocacy skills.
  • Pleasant demeanor, even in the face of distractions, dismissals, and disbelief.
  • Ability to think, reason, and problem solve.
  • Computer skills, especially Microsoft Word and Excel. Ability to scan and upload documents to online systems. Ability to navigate complex online systems.
  • General office duties, including phones, copying and scanning documents, filing, responding to emails, processing paperwork, and other additional administrative duties as required.
  • Schedule appointments and ensure they are kept.
  • And of course, other duties as assigned.
This photo of a photo is from my first "real" job out of college. When they didn't have work for me, my job was to clean out old client files. It was boring and tedious and back-breaking, and those are just some of the files. I just *thought* it was an awful job. I would happily do that again - if I could. I can't.

This photo of a photo is from my first “real” job out of college. When they didn’t have work for me, my job was to clean out old client files. It was boring and tedious and back-breaking, and those are just some of the files I had to deal with. I just *thought* it was an awful job. I would happily do that again – if I could. I can’t. (P.S. Shoutout to hubs for finding this in my old photo album, from long before digital!)

And what is this fabulous job, you may ask? (If you didn’t get it from the title…)

It’s being a Sick Person.

It’s doing all of the above, while fighting chronic pain and chronic fatigue and chronic brain fog. Which means doing any of it is a huge struggle.

If you saw a job description with all those duties, and the added bonus of no time off, no pay, and no social life, would you even consider it?

Of course not.

But for me and the bajillions of other people who fight disabilities and illnesses, all of the above is reality, plus:

  • Never, and I mean NEVER, not even for a minute, getting a break from your pain or fatigue or other symptoms. Except maybe when you’re asleep, and even then, maybe not. If – and that’s a big if – you can even go to sleep in the first place.
  • Fighting with doctors and insurance to get the care you need. And documentation you need. And support you need. Following up with them more times than you can count.
  • Fighting the stigmas against us: that we’re lazy; that we’re “lucky” to stay home all day; that we’re making it all up; that we’re addicted to our medication; that we’re a drain on society; that we’re moral failures; that we should just disappear and not talk about this; that we should pull ourselves up by our bootstraps regardless of our minute-to-minute realities; that we don’t deserve to be happy; that if we’re happy, we can’t possibly be sick; that we did something wrong and deserve this…
  • Having to prove, over and over again, that you really are sick.
  • Researching doctors and illnesses and symptoms and medications and side effects and co-morbities and possible treatments.
  • Keeping track of diagnoses, symptoms, medications, doctors, appointments, calls, money spent.
  • Making sure you take your medications when you’re supposed to.
  • Advocating on your own behalf.
  • Losing friends because you can’t do things anymore, and they get tired of hearing about how terrible you feel. And you get tired of having nothing to share but how terrible you feel.
  • Missing out on events and fun and movies and theater and babies born and friends’ milestones and … well, life.
  • Worrying about money and how to pay for doctors visits, supplements, lab work, treatments, and procedures, especially because you can’t get or hold an actual paying job. Worrying about how to pay for things indirectly related to your illnesses, such as housing expenses, utilities, food, gas, car insurance.
  • Not giving up, even when the pain has you in tears. Even when yet another doctor refuses to treat you, or answer your questions, or give you what you need. Even when you have to fight your own mind to convince yourself on bad days that there will be good ones, and convince yourself on good days that you really are sick and need help.

I didn’t sign up for this job, but it’s my life now.

Pray you’re never forced to take this job.

More ramblings / other posts you might want to read...


About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #dSavannahDefects, depression, health, illness, insomnia, mental illness, perseverance, shining a light. Bookmark the permalink.

6 Responses to #ChronicIllness: the worst job in the world

  1. Elaine LeDoux says:

    What an amazing way to explain what living with chronic illness is like! I just hate that you have to go through this

  2. Betsy says:

    Being a sick person sucks. Sorry my BT has to have this job. :(

  3. Never thought about the matter from this point of view. Interesting post. I am looking forward to reading more. Thank you for posting!

Whatcha think? Tell me, tell me!