My Job is Chronic Illness
“What bi**h working as hard as me?” – Cardi B
Me, Cardi B. I’m working as hard as you, though going into 2018, I haven’t been able to work a job for 3 years.
My first “real job” was straight out of high school. I was new to being chronically ill, sleeping 14 hours a day into the afternoon, didn’t really know I was in pain as I thought I was just “sore” and should deal with it. My joints had started to pop more, we were considering some shoulder surgeries. We had just started seeing doctors and doing trials of new medications, but like others my age being right out of high school I believed I was prepared to make a decision about my entire future; to either spend all of my time on university or work, a common decision made by students, in fact one that had been made by almost every single one of my classmates pre-graduation.
I decided I was to work full time after I finished high school.
I took on a job doing accounting for my family’s business, instructed under their full time accountant. I was setting an insane amount of alarm clocks, taking my sleep medication, having my family wake me up, but some days it was impossible quite literally. I would not wake up no matter what happened. I began to be late for work. The strain of sitting at work started to hurt my back and I was slouching or wearing a back brace at all times. Walking around the office went from sturdy to questionable, and I was sized up for orthotics, a new back brace, leg braces and bought a cane. My arthritis started acting up in my hands soon enough, and over a 3 month span my doctors’ appointments increased from once a week to once daily as a minimum.
In less than a few months, I was missing work more than I was able to be at work.
Between sleeping in until 2pm and then having doctors appointments take up my time until 6, I was no longer able to be at the office and sent in a notice that I had to resign. At this point, I started to get questions and comments that I was not overly appreciative of.
“You’re so lucky you just stay in bed all day.”
“You’re so lucky you don’t have to work.”
“I wish I could quit my job and take care of myself all the time.”
These a few of my favourite quotes from those who are unaware of how much a job chronic illness is.
That is what chronic illness is, a full time job.
A job that you are at all night, and all day. A job that follows you home, that follows you on every outing, a job that will ultimately have to come first over everything else in your life. A job that takes over your life completely. Chronic illness does not care whether I am lying in bed at 3am, doing an important presentation, or out for dinner with friends, it will interrupt me at any time and I will have to “go back to work” so to speak. I have to remove myself from the situation, assess my condition, assess treatments and move forward with treating myself.
We have to be our own accountants.
Medical supplies are expensive and are not covered unless you have had time to sign up through complicated processes for disability and other coverages, which are also often denied to people with chronic conditions. Clothes, food that fit your likely very tweaked diet, items such as medical syringes, swabs, etc. Medications are also extremely expensive and uncovered. Personally, on 14 medications, after coverage all of my meds can cost around $600 per month. We have to consider all of our high priced necessities at all times. Our funds for personal enjoyment after paying for all of the things that we absolutely need are often very insignificant, extremely insignificant in comparison to what we had to buy to stay alive and functioning.
We must keep track of appointments, results, and record everything we hear from our doctors.
My brain feels constantly muddled from pain, exhaustion, and often the medications I have to take to stay alive, and thus keeping track of everything I am obligated to do to continue to stay alive is very difficult. I have to keep record of what is said during every doctor visit, retrieve their summary which can also often cost money, and keep them in a filing unit that is relatively easy to go through as often I must bring records to each appointment.
I have to keep track of which doctors I need to see every few months, which doctors I need to call for each issue that I may come across, and keep track of when I need to visit doctors to renew prescriptions.
We have to be our own advocates.
I have to be an advocate for myself, even when I am too exhausted to remember what I came to an appointment for, even when I am in too much pain to speak, even when I have used my last “spoon” preparing for the appointment and getting to the appointment. I have to make sure that the doctors are taking me seriously, which often they don’t to my dismay because I am young, I have to make sure that the doctors are fully aware of my condition and have done research into it, which often they haven’t because it is very complicated and extended. I have to make sure that the doctors are taking action, which often they are reluctant to do again because of my age.
Overall, though I am not working at a typical job or doing schooling as most people my age are currently, I am working full time.
I am working hard every single day to keep my body in a constant state of “pretty damn disabled still”. So though I am not “working” typically, I am constantly at work and my body is a job that is constantly testing me. I don’t stay in bed all day doing nothing, if I am in bed it is because I am taking care of my body so I do not suffer another consequence later on. Most things I do are calculated around my body and the amount of activity it can handle, how many “spoons” I have at that moment.
I am not the only one working this job. So many that suffer with chronic illness are working at the same job as I am, and we work at it without breaks. Here’s to those with chronic illness, the spoonies and those who suffer from any condition that have bodies that are a full time job. Remember that your body is a full time job, and keep on working.
A big thanks to The Chronic Love Club for inspiring me to put together this post! CLC member features have really brought together a fantastic community of young chronically ill people, as well as a lot of awareness for those who are young and chronically ill. Follow CLC on Instagram to see more posts from them!
Sydney was officially diagnosed with hypermobile EDS (hEDS) with comorbidities in March of 2017 at the North York General Hospital, in Ontario, Canada. She enjoys hanging out with her 30+ pets and writing for multiple blogs as well as working on publicity for various pages and people!