The Guilt of Not Working
In a capitalist society, your worth is measured by how hard you work and how much money you make. For those of us who physically can't work, that can leave you feeling worthless.
I was born with Ehlers-Danlos Syndrome, a connective tissue disorder that causes thin, easily bruised and torn skin, as well as weak joints that ache and dislocate easily. For years, I pushed through incredible amounts of pain just to make ends meet, while shooting weddings on the side. I took jobs that required standing 8+ hours at a time, even though my knees would hurt so bad I'd sit in the bathroom and cry on my breaks. No one realized how bad things were, because I was always worried I'd lose my job if they knew. I already couldn't drive, what would happen if they knew I couldn't even stand?
Working got even more difficult when I was diagnosed with Crohn's Disease, an autoimmune condition that attacks my digestive system. Now my body hurt, I had trouble eating, and the fatigue I'd been experiencing my whole life increased by tenfold. I still tried as hard as I could to work, because I had to.
There came a point last year when I couldn't do it anymore. I was working at a product merchandising company, running the business as the Operations Manager and doing a little bit of everything in the warehouse. It was honestly my dream job, where I got to do photography, graphic design, screenprinting and use all the knowledge I'd paid for in school. I wanted to do well, and I pushed myself as hard as I could to meet expectations and deadlines.
Between working 60-70 hour weeks, traveling 6+ hours to NYC and back for events and shooting weddings, my body crashed. I got more sick than I had ever been in my life, and my weight dropped dramatically. It hurt to breathe, it hurt to sit, it hurt to eat. I started calling out of work on the worst days.
Eventually I looked at my boyfriend and said, "I need to quit my job, it's killing me." He didn't care, he'd support us both until I could work again. He just wanted me to get better. Even after I quit, I didn't get better.
Within six months I was 85 lbs. Bites of food were impossible and I was wracked with random abdominal pains so bad they would drop me to the floor. Dave went to work, I stayed home with the dogs, and that was just the way things were. I'd still shoot weddings when I could to help, but it felt like a drop in the ocean of surmounting bills and life expenses. Not being able to drive made it worse and I could feel the depression settling in.
There's a cliche that says you don't know what you've got until it's gone. I miss working. I miss having a purpose. I miss providing for myself and my family. I can feel myself thinking more slowly, and there's an anxiety that develops when you stop socializing for long enough. Dave works incredibly hard to make up the difference, which usually means I'm alone for 10-12 hours a day.
I went from having my dream job, working with huge companies like Levi's and celebrities like Snoop Dogg, to slowly wasting away in the middle of nowhere Vermont. The guilt is massive and heavy.
I'm thankful that Chronically Capable exists for people like me. The process of applying for remote jobs is hard, and the market for them is tiny but I have to do it. Sure, state assistance exists. I could apply for disability and collect a check every month, there's nothing wrong with needing to do that. But, I wouldn't have a job. I wouldn't contribute to something. I wouldn't wake up in the morning looking forward to making cool things and meeting amazing people. This site gives me a little bit of hope in a very rough time.
Thank you for everything you do for the people who need you. Everyone knows what hard work is, but not everyone realizes how much harder life is when you can't do the hard work. You gave me some hope, and that's really what I needed.
We sat down with leadership at KeepTruckin, a Chronically Capable partner, to find out what makes their workplace inclusive for chronically ill and disabled employees.
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