This is a note from a fellow traveler, a girlfriend, like us. By the way, the article she’s referring to is my recent newsletter – you can subscribe on my website
Dear Rosalind,
I’ve owned a business since 1979. I’ve always been known as the go-to person by my partners, employees, clients and fellow volunteers in both local and global efforts. I was “invincible”.
Two years ago I began exhibiting the symptoms of Fibromyalgia and Chronic Fatigue. What a shock! Previous to this, I had always counted on my health and strength as givens. Then, suddenly, I literally couldn’t get out of bed.
With persistent effort and enlightened medical advice, I am now operating at about 2/3 of my usual level of activity. It’s been a hard adjustment from me, my family, friends and colleagues. Some expect more of me that I can handle. Others ask for less.
Your ten points of conversation (10 things I want you to know about living and working with chronic illness) are invaluable in explaining to others how I feel both physically and mentally. I plan to forward your newsletter to a number of people. It will be very helpful in increasing their understanding of the mercurial and frustrating nature of chronic disease.
Thank you so much for sharing your wise counsel with people around the world. Wherever we are, working with a chronic disease has similar challenges. Sometimes it feels very lonely. Knowing there’s a community out there finding ways to deal with this issue is most comforting.
Taunee Besson, CMF
President, Career Dimensions
Okelle says
My friend Ken Mattsson (http://www.resonare.com) just forwarded me your article “10 Things I Want You to Know about Working While Living with a Chronic Illness.” As someone who was diagnosed with a chronic, lifelong illness at the age of 17, I found that it articulated a lot of my frustrations and fears about what it’s like to live and work with an illness.
For most of my career, I have lived in fear of employers and clients discovering my diagnosis and have done my level best to “hide” any symptoms of the illness. In 2002, my full-time employer actually did lay me off under very questionable circumstances. At the time, demand for my skill set had taken a serious dive, and I spent the next 9 months unemployed. I finally found a contract position that offered no benefits. After about four months, the position ended suddenly. Without any savings whatsoever, and with demand for full-time employees in my field at an all-time low, I suddenly found that I had no choice but to start the business I’d always dreamed of starting.
The first few months were full of constant worry, but I did succeed in making the transition. Although I successfully supported myself and increased my income dramatically during the next few years, the stress and loneliness of sole proprietorship began to make full-time employment look attractive again. In August of this year, I took a job with one of the best employers for my industry. Unfortunately, in December, my condition deteriorated so severely that I needed to be hospitalized and placed on short-term disability. As of this writing, I am making arrangements to return to work (hopefully on reduced hours). I am terrified that I will see a repeat of what happened in 2002, although my rational mind reminds me that my past is not my future, and that circumstances are much different this time around.
On behalf of chronically ill — but not disabled — people everywhere, I would like to thank you for your service. This article has proved very helpful, and I may even forward it to my supervisor and coworkers.