Chronically Employed: Scheduling Work Around Fatigue, Honesty With Clients
June 3, 2013
56, Waxahachie, TX
GG: What is your disease/disability, and how does it specifically stop you from working a full time job outside of home?
Nunn: Lupus. The first symptom I developed was a crushing tiredness, falling asleep at my desk midday, which is something I’d never done. As the disease progressed, I developed pains all over my body, including swollen joints and pleurisy that felt like a giant clamp around my ribs making it painful to breathe. Doctors didn’t recognize it at first, saying I was stressed or had bronchitis. Yet I went from being a business owner of a company that grossed around $200,000 annually with 15 employees to being unable to supervise anyone and finally not being able to work at all.
GG: How does the job you created allow you to work from home and on your own terms?
Nunn: I was fortunate in already having started the business and having a good reputation in the industry, so all I had to do was modify my world to adapt to my situation. However, the same strategies can work for someone who is starting from scratch. You simply have to list your skills and interests, then do your research in the industry that is most interesting to you until you can pinpoint a need within that industry that matches your skillset. I knew that there was gap of affordability for PR work that needed a bridge, so I tailored my fee structure to be more affordable for new and first time authors or authors from smaller presses.
When I started business again after the diagnosis of Lupus, I had to adjust how much I could do and limited the number of clients I’d take on so that I could manage them myself without needing a group of freelancers. In this business, deadlines are vital and I knew I had to incorporate down time into my schedule for those days when I simply can’t work. I’ve been doing it for two years now and it’s going great, but I know that I can experience health problems at any time that will create obstacles. I hope I do a good enough job that my clients will be patient if and when that happens.
GG: Do you still encounter any challenges with your new profession because of your illness? How did you work around it?
Nunn: The biggest challenge I face is still my fatigue or lack of energy. I’ve had to learn to sleep a longer amount of time and still schedule a nap time into my day. I find I do better working two to three hours at a time, then resting for an hour or so before starting up again.
GG: Do you work alone or with other people? How did you explain your situation to them or did you have to say anything at all?
Nunn: I hesitated to tell people about my illness at first. I’m more frank about it today than I was, but I still don’t broadcast it. Most people don’t have a clue what Lupus is (nor did I until the diagnosis came), and even medical personnel don’t really understand it. I didn’t think it would be good for business to say, “Hey, I’ve been sick and actually I still have this disease but I’m better and I can work for you again.” As more people have been told, I’ve been pleasantly surprised at how understanding my clients have been, but I have to be realistic. They pay me to do a job that is time sensitive. If it gets to the point that I can no longer meet deadlines, they’ll have to hire someone else. I think the important thing is to be honest with them and keep lines of communication open.
GG: How do you handle necessary benefits like insurance that comes with normal 9-5 jobs? Do you use a spouse’s insurance, a parent’s or government funding?
Nunn: This is a very hard topic. I have been turned down several times for insurance due to preexisting conditions. I found a high risk policy that would accept me, but the cost was more than twice my house payment and I can’t afford it. I do qualify medically for disability, which would include Medicare (after a two year wait). But I can’t support my family on what I’d get from disability, so I have no insurance and no government benefits. I also need treatment and testing (including a kidney biopsy) that I can’t afford and haven’t been able to get.
GG: What is an average day like for you at your new job?
Nunn: I get up around 8:30 am, take medication and eat breakfast. I usually am at my computer between 9 and 10 am. I work till noon on the computer and the phone, planning promotion events for authors (such as book signings, radio and tv interviews, book reviews etc.). I take a break for lunch and usually try to lie down for an hour and a half, then go back to work by 2 pm and work untill around 5 pm. If I’m having a good day, I’ll usually go back to the computer after dinner and do some writing. I do freelance articles in the health field and am working on a series of mystery novels.
GG: What advice do you have for other patients looking to start a new kind of job that fits around their illness?
Nunn: There are plenty of problems out there that people need someone to solve. It’s important that you be realistic about your skills, your interests and what people need. Get on the internet and do your research about jobs you can work from home, but don’t be limited by what you find there. There’s a first time for everything. But do make sure your research is thorough and that you understand what it takes to start a business. Set your fees to be reasonable and always set realistic and tangible goals. It’s hard to hit a target you can’t see.
About the Author:
PJ Nunn lives with her husband and some of their five children near Dallas, TX.
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