After reading about all my misadventures here, you might be thinking: how does this girl pay her rent? The rumors that I’m a disabled stripper or that R.J is secretly the inventor of Vapor Rub aside, I do actually have a day job.
I’m a gymnast!
Okay. Okay. I’m a work-from-home editor and writer. I work, for the most part, for a great organization called Global Genes. They’re an international rare and genetic disease non-profit and they let me work from home or hospital—hell, as long as I get the job done.
On any average day I’ll wake up, open up the blog to make sure all of my scheduled posts went up and no one DDS’d the site and put up naked pictures of Bill Cosby. (There is no precedent for this, but one must always be vigilant.) I edit patient stories, do interviews over the phone, write about upcoming awareness days, events, or fundraisers. And answer patient emails to make sure they get to the right people on our team.
I love my job, and I’m so grateful that I’m able to take on the world from the comfort of my bed on days when I’m truly incapacitated and would have been sacked immediately from any other job.
I also freelance write for health magazines and write up the rare press release every now and again.
At this stage in my illness and with my symptoms being as mismanaged as they are—I honestly don’t know what else I could do, if I ever had to find another gig.
So I started asking around. What do other people do for a living when they have a chronic illness?
Like I said, I asked, and you answered. Here are some of the responses I got:
“I’m a TV Producer, and I just do it.” – Carri Levy, Fibromyalgia and SCID
“I sell SeneGence products (LipSense and the rest of their face and body care lines). It’s a nice income for me. I was a Barber.” – Tonja Dan Muret
“Clinical social worker – I work several jobs always and just push through also.” Elyse Schwartz
“Business analyst for UnitedHealth Group. I push through most of my symptoms but I am lucky enough that I can work from my home office on days I am symtomatic. I can attend my meetings lying down at home. If I am in the office I can take over a quiet board room and attend meetings over the phone. My employer has been very accomodating to me.” – Nicole Evans Estenson
“I am a homemaker. I use medical marijuana for pain. I’d like to work. I can probably be okay, I think, using CBD.” – Anon.
“I work in surgery. I transfered to a sterile environment. I mask when ever I leave my house and my doctors have a set schedule for me 8 hrs only and 4 on Weds and I come home and sleep. Now my weekends I just sleep them away in order to be able to work a full week the next week. Its always a learning process.” - Brandi Marie
“A life and business coach – and former teleclass leader – who works from home, in comfortable clothing and in bed when needed. I set my own hours to accommodate my body’s needs. But “they” don’t know. Thank goodness for headsets, the Internet, laptops and lap desks. When flares were intense, marketing efforts had to go but working with clients distracted me from my own issues for a lovely while, like my body pain disappeared. Of course, if really severe, I’d have to reschedule.” – Joan Friedlander
“I work at a City Transportation Agency. I limit the plans I make on weeknights and try to reserve one full weekend day to crash/stay in bed. I used to work from home one day a week at my last job, which helped a lot, but that makes less sense in this job.” – Maddy
What’s your work situation? Are you a work-from-home or hospital employee? A contract worker? Do you take breaks? Have paid time off? If you work despite your symptoms being too much to combat—what keeps you going?
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