I'd Rather Be Working: An Interview with Gayle Backstrom

Patient Expert

As follow-up to my recent Beginner's Guides to work and going back to school, I interviewed Gayle Backstrom, author of I'd Rather Be Working: a Step-By-Step Guide to Financial Self-Support Review with Chronic Illness. Gayle also wrote When Muscle Pain Won't Go Away, the first book for laypeople on fibromyalgia.

The first in her family to graduate high school, Gayle joined the Navy during the Vietnam War and developed fibromyalgia after a service-related injury. She has had a number of different jobs including high school librarian, college instructor, photographer and writer. Gayle shares her home in Denton, Texas with five cats. Her next book will be a novel.

What inspired you to write I'd Rather Be Working?
Because of my chronic health problems I have often had to be creative in supporting myself. Even when I held traditional jobs, I lost several because of flare-ups of my chronic pain. Many job-hunting books have been published, but very few of the books addressed the needs of those with chronic illnesses (CI) or disabilities. I felt that there must be others who could benefit from my experiences.

Did anything you learned researching your book surprise you?
The main surprise was that although one in five Americans has a disability, only 32% of those with disabilities were employed in 1998. By 2007, that figure stood at 35%, according to the National Organization on Disability.

You wrote about the importance of honest self-evaluation, not just of qualifications and experience, but of limitations. Do you have any recommendations that will make facing your limits easier?
[P]erforming an honest self-evaluation is one of the hardest actions that anyone with a CI or disability will take.

Step outside of yourself and try to describe your symptoms and your limitations as if they belonged to someone else. When you do this strive for honesty, but also fairness. If you must take a 15-minute break after every hour or hour and one half of work; state that. Don't try to push yourself.

It can be done but it requires honesty within, first. Then you can begin to find adjustments at home and with your family, the community and finally within your work place.

What's the hardest part about working and living with a chronic illness?

Pacing is the most vital part of managing your chronic illness, [it] enables us to better manage our energy and ability to work and function and at the same time is the most difficult to achieve. I wasn't always able to manage the combination. That is one of the reasons that my employment history is so erratic and the housework suffered along with any social life.

Tell us how you managed chronic pain and fatigue at work.

I found work that was flexible and which allowed me to rest around the work. Sometimes I had to push myself through the pain and fatigue to teach a college class or schedule photograph sessions. Sometimes I came home and spent every evening and most of the weekends in bed.

In I'd Rather Be Working, you mention how taking care of yourself and acceptance of your condition are important parts of managing your disease. How does that affect your ability to work?

If you do not take care of yourself and your body first, how can you manage anything else, from housework, to caring for your family members and then ultimately managing a job or career?

What's the most helpful or thoughtful thing anyone has said to you about dealing with a chronic disease?
"You are not your disease. You are an individual who just happens to have a chronic illness. Remember you are not defined by your illness."

What's the one thing everyone with a chronic disease should ask about at work, but few ever ask about?

It is important that you have a written job description. Many times I have found out months into a job that I was also responsible for certain activities, but whoever hired me "forgot" those activities. Having a written job description may keep you from being laid off or fired for not performing those activities.

If your condition starts to affect your job to a point where you'll need to look at other career options, you mention the process of "Rethink, Refocus, Retrain" - could you give us more detail about that?

RETHINKING involves taking a new look at your entire work experience. If you have been a CEO of a company, but your body no longer allows the physical capability of carrying that load, you must look at something that isn't as demanding. This change can be difficult or exciting.

REFOCUSING means to look at what you might like to do. What is required to get started in that special interest? Can you manage it physically, mentally, spiritually? Know what it will take to be hired or obtain such a position.

If it requires RETRAINING, you must determine if you can afford to obtain that training or even if you can't afford not to. Training, education and knowledge is one of the biggest problems that keep those with disabilities from obtaining new jobs.

Take the steps, gain the knowledge and then move into your new life. Allow yourself to be excited and happy about your future - one that is geared towards you and your chronic illness.

Should people be more careful about asking for accommodations in the current economy?

If you haven't asked for and/or received any accommodations for your illness; consider providing some for yourself. I'm not telling you to go out and get an estimate on installing an elevator in your building; but something in the order of elastic hand/wrist supports if you do repetitive motions or a foot rest that would allow you to put your feet up a bit to ease aches.

Regretfully, I believe today's climate might allow some employers to take advantage of some employees with disabilities. If you are not performing at 100%, this might give the employer the opportunity to decide that they could save money by letting you go. The Americans with Disabilities Act makes it illegal to fire someone with disabilities if they are doing their job, but sometimes, they can get around this by stating another reason for the discharge.

A statement that stood out for me when I read your book was "when a door closes, open a window." How have you been able to "open windows" in your own career?
When I was unable to continue working at a full time job, I had to look for work that was more flexible. Sometimes, the job or work was right there in front of me and I just had to apply or take it on. At other times, I had to consider what my limitations were and look for opportunities.

An example was when I saw the popularity of books that had characters in law enforcement. I had not seen any workshops that offered writers the opportunity to meet with men and women from a variety of law enforcement agencies, so I organized one. I had one person helping me, gave free admission to a couple more in exchange for assistance and I had a sell-out crowd. I even sold tapes from the workshop.

If a door closes in you face and leaves you with a sore nose, force your way out a window. All you have to do is know yourself and your limitations, do your homework on the new direction in your life and go for it.

Good luck.

Gayle has graciously agreed to answer several work-related questions from HealthCentral users. Leave your question about career, accommodation, further education, etc., in the comments bpm ESunday, May 10, 2009. We will select a few and post Gayle's answers on May 20.

You can read more of Lene's writing on The Seated View.