Chronically Employed: Creating a Job When One is “Wholly Unemployable”

When Taylor realized she wasn’t alone in her “cumulative poverty,” she created the Chronic Illness Relief Fund to help those struggling with the paperwork for disability. Her easy-access program helps chronically ill patients live with a better quality of life.

My inspiration came from my own battle with chronic illness. When I was hospitalized for two weeks for heart surgery due to a blood clot and suffered from nine minor strokes in the six months following that event, I knew my life was going to get much more difficult, but I had severely underestimated the severity and magnitude of that difficulty.

From that moment, I had a team of doctors and went through about a year of testing here in Charlotte at Presbyterian and CMC and in Durham at Duke. I was on about 15 different medications and was constantly ill. During this time, I had to quit my job because I was obviously unable to work and soon found myself without a means to fund my cost of living expenses like food, electricity and every other basic and essential need.

Through these struggles, I realized that there is a cycle of chronic illness, and that cycle causes what I have termed “cumulative poverty.” This simply means that, over time, avoiding poverty and reliance on governmental programs becomes nearly impossible.

Last year I was living off of food stamps and investing the small amount of funds I had managed to save during my last well period on applying for disability. SSD is a fabulous initiative and am so grateful it’s available, but it’s a raw deal. Applicants are unable to work during the application period, receive minimal funds and are subject to government control over their personal health practices, and the list goes on.

Mid-application, I decided to invest my time and efforts in creating a job for myself since I am wholly unemployable. I knew I had too much to offer this world to be limited by the confinements of SSD; I wanted to use my skills, talents and tenacity to secure an independent future for myself.

I created a contract management company, Vogue Management Services, so that I could work and live on my terms, which is my only option for generating income of any kind. In an effort to raise awareness for my new enterprise as well as for Lupus, my disease, I decided that my company would host a fundraising event for lupus research. Lupus research is a wonderful cause and is obviously a cause close to my heart, but it left me wanting so much more.

During this planning process, I became very aware of the fact that it was the time to act; I wanted to implement my ideas to accomplish the goal of helping people with chronic illness live better lives; I made my life a better place and I knew that I had all of the necessary components to create programs that help others suffering from CI live happier, higher-quality lives as well.

The idea for CIRF woke me up in the middle of the night. I immediately got out of bed, wrote everything down, and a few hours later, CIRF was born. Over the next two months, I spent all of my time and energy turning these ideas into reality.

I wanted to create a company that, unlike most, was accessible to anybody who is ill, regardless of the type of illness and of a diagnosis; the diagnostic process is often the most debilitating aspect of the process of coming to terms with your new life as a sick person—financially, mentally and emotionally. Most charitable organizations require a firm diagnosis for a specific illness and proof from a doctor to that effect, which, in my opinion, is a massive problem.

I also wanted the application process to be free of charge and nontraditional. We want our applicants to show us their lives through stories, videos, photos, etc. We require that you prove you’re sick on a recurring basis; photos or copies of medical bills, hospital bracelets, or medical records—anything with your name, the date, and of a medical nature. We require that you send a photo or copy of your most recent tax return, even if it is a few years old, in order to show us that you want to contribute to the economy and the services and opportunities that our taxes provide us with. Finally, we want to know what type of assistance you’re looking for—groceries, car/home repairs, utilities, etc—and how that assistance would impact your life. And that’s it; no hoops, fees or strings attached.

Want to share your story of employment during an era of chronic illness? Tell us your story here!