Sometimes you get sick and you don’t die.
In North America, 117 million people live with a chronic illness. Despite the complications their disease creates in their lives—they still have to make a living. Despite their doctor appointments being in the middle of the afternoon, despite their unexpected surgeries and hospitalizations, and despite the symptoms that make life all the more confusing and difficult— they still have to work.
When you have a disease that isn’t killing you tomorrow, you have to start making plans. How are you going to support yourself and your family when you’re sick?
I think everyone who has ever been diagnosed with a rare disease looks back on the days before their diagnosis and thinks “everything was so simple.” I remember carrying around my agenda where I wrote down every hour of my day and then realizing there was no point in planning. How could I plan for a life when my disease had changed everything? How could I keep my company going when I never knew if today was going to be a hospital day or an emergency surgery day or a just-can’t-get-out-of-bed day? I was twenty-two years old and pumping plasma product into my stomach, trying to keep my immune system afloat. My world was crashing down around me.
I had no intentions of going on disability or relying on my then-boyfriend, now-husband to support me financially. I could live with my disease. I could not live with it taking away the part of me that drove me to get out of bed every morning and keep going. I had to work. And so I hung on to my career with every last ounce of energy I had left.
And the opportunities came.
Learning to find freelance and remote jobs became my daily practice and over the years I found my niche in the writing, marketing and patient advocacy fields.
While I started businesses, worked with some of the top advertising and marketing agencies and leading advocacy groups—I also endured many hospitalizations, multiple surgeries and was attached to an IV pole for six hours every day.
I’m not a superhuman. I’m not even lucky. I just figured out how I was going to make my career work best for my unique situation.
Chronically Employed is a way for you to find jobs that work best for you. Through job listings, patient stories and career advice we’ll work to equip you with the skills and opportunities you need to become a chronically employed patient and a more independent person.