Master the fundamentals and you don't have to be invisible at work living with chronic illness

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I coach, I write and think about this topic: how can a person live as full a life as possible when living with invisible chronic illness?   Yup, people do tell me me that I can get to be a bore, always referring to this.  It’s become a reference point for me for most of life.  But is there another way to it?  I don’t think so.  It’s funny because I’m often a quick study.  I catch on quickly and can look like I know what I’m doing.

I don’t know about you, but it takes this kind of focus for me to “master” anything.

Nothing I’d done before prepared me for living with invisible and chronic illnesses.  I wish there was — but I’ve learned that this isn’t — a simple prescription. I don’t believe there is one “affirmation”. I can’t offer one piece of advice (although people email me frequently asking for it). I haven’t found the one, life-changing book. No, I think it’s about realizing that living with illness radically changes your life and it’s going to take lifelong learning to learn to live with it masterfully (or even adequately!) There are the fundamentals any student has to learn. And then there is mastery, where you don’t get thrown with each new punch or bump in the road. This kind of mastery happens over time as you test out and continue to refine what you’ve learned. You have to work at developing the breadth and the depth. Monday, September, at 6:00pm Eastern, I’ll be sharing some of the “fundamentals” about living with this thing we call chronic illness — as part of restministries.com weeklong series. Stop by and join the chat.

My friend and colleague, Laurie Edwards, (a chronic dose.com) is writing an article and is looking for people to interview: Have you joined any Facebook disease groups? Do you see yourself ever adopting any health-related applications on Facebook? Would you prefer to leave chronic illness outside the realm of social networking altogether? I’m writing an article on social networking sites, viral marketing, and health care/Pharma and am interested in hearing from people ages 22 and up who have a medical condition and use Facebook. If you’re interested in being interviewed or have any questions, please e-mail me at laurie.edwards@gmail.com.

Even a doctor with scleroderma can find symtoms demoralizing

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A coaching client asked me whether she should start planning her application for Social Security Disabilty benefits. My client, a primary care physician who has three children and a very busy practice, lives with scleroderma. At 50, the disease is getting worse (some days she has trouble holding a pen), her energy is slowing downRead More

Recommendations to Social Security Administration

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Last summer, I was honored (and a little intimidated by my colleagues) to participate in a process to advise the Social Security Administration on ssdi and ssi benefits. Hold your applause. They’re not giving away more money (did you know that SSA gives out 120 billion dollars in benefits) — just trying to make theRead More

September – Did you know that it's invisible chronic illness month

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Lots of stuff going on in the next month for those of us living with invisible chronic illness, thanks to the work of rest ministries.org. What makes this great? Well, in today’s world of rapid fire information and the power of the internet, this information sharing can only help those of us who want toRead More

"Sick" humor or Affirmations – either can be good for the soul

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I love this posting, The top ten worst suggestions commonly given to someone with a chronic illness, on a very fun site, But You Don’t Look Sick. I’m so NOT “funny” (I wish I was though) — but I love when someone can make me laugh. But along the lines of different strokes for differentRead More

Disease Management: A place for career coaching

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Recently, a new industry has emerged that many people are unaware even exists. It’s called disease management and it’s another effort at health care cost containment. These programs are funded by employers (and or their insurance companies) with the intention of reducing the high costs incurred by a small percentage of people. According to TheRead More

Weight – Is too much a chronic illness?

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Should being fat be considered a protected category? Should it be considered a chronic illness? An article in last weekend’s Boston Globe Magazine, Do We Really Need a Law to Protect Fat Workers?, talked about a bill that is being considered by the MA state legislature to protect obese people from discrimination. “… it’s hardRead More

The Best Careers in 2006

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In today’s The Wall Street Journal Online – Career Journal there’s an article about the “Best Careers in 2006”. The WSJ researchers came up with 8 careers: Curriculum and instructional coordinators High-school special-education teachers Hospital and clinic managers Management consultants and analysts Medical researchers Physical therapists Sales, marketing and advertising managers Social workers, counselors andRead More

"Can we talk?" I live with an ileostomy

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This week, I had an epiphany. I don’t talk about living with an ileostomy. What made me realize this? My friend and colleague, Jenny Prokopy (Chronicbabe.com), is a freelance writer and was looking for people to interview for a piece that she’s working on for The Phoenix, the magazine of the United Ostomy Association ofRead More

The CDC recognizes the "reality" of chronic fatigue syndrome

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Hooray. The Center for Disease Control (CDC) is releasing studies showing that chronic fatigue syndrome is a real disease and not just “yuppie flu”. They’re also sponsoring a $6m public awareness campaign about the illness. That’s a start in the right direction toward helping individuals with this disease feel less like they’re “psych cases” orRead More

Headaches can be a real pain

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This spring, I’ve had miserable headaches from allergies. I’m noticing that it’s affecting my relationships. Just today, my dog, Iko, looked at me quite angrily when I cut our walk short because every footfall caused ratcheting pain. The pain gets so bad sometimes that only acupuncture (thank you my wellness medical team) gives relief. I’veRead More

Chronic illness is a work & family issue

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This morning, I went to a meeting of the Association for Career Professionals – Boston to hear the executive director, Brad Harrington, of Boston College Carroll School of Management, Center for Work & Family, talk about the Protean Career. Huh? Well for those not up to date on career theory, this is a model thatRead More

Business from bed

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Thank goodness for self-employment and businesses that can be run using a phone and laptop. During the times when I was dealing with the more difficult flare ups I made all sorts of adjustments to both take care of myself and get my work done. Looking back, I would have rated my body a 4Read More

Keeping your job – an exercise in leadership

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I’ve been thinking a bit about what it takes to regain some control over your life and your future when you’ve been derailed by your body. Truthfully, it’s the same with any unexpected circumstance that suddenly changes everything. But we’re all here because our bodies have presented us with some life-altering challenges. I’ve lost twoRead More

So, why keep working?

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Benchmarks can help a person think about your life: what’s happened to you, the choices you’ve made and the results of those choices. When I was younger (say under 30), this was something other people talked about but I didn’t really “get it”. Not anymore. New Year’s, my birthday … even mother’s day, I findRead More