

Living with Chronic Illness: Are You Talking?

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Living with chronic illness means that life's challenges become ...  even more challenging.

After more than 10 years of coaching people around living with illness and their work life, bloggingcommunication skills when you have chronic illness on this topic,  and in my personal experience, I've decided that the basics matter.  The basics allow a person to thrive, not just survive.

Here are my top 3 thriving skills:

1.Communication 2.Communication 3.Communication

Yup.  It's that important.

Let's look at why.

First, most illness symptoms are invisible.  No one knows  what your symptom/health is today/ in this moment--  unless you tell them.  And even where some of effects are visible, that doesn't mean that others understand how this impacts YOU, unless you tell them.

Further, even if your boss or best friend lives with a chronic illness, it doesn't mean she's experiencing the same symptoms or having the same disease progression.  Even more importantly,  pain and fatigue (2 primary chronic disease symptoms) are subjective experiences.  What does it mean to rate it on a scale of 1-10?  Nothing other than to define how you experience it at this moment in time.  That means your herniated disc or ulcerative colitis symptoms impact you in a certain way.  Often it impacts you differently day to day.  Another person with the same clinical findings on an MRI or a Colonoscopy will likely have a very different response and experience.   That puts the burden on you to describe what's going on to others --  if you choose to.

Finally, although almost 50% of the adult population live with at least one chronic disease  (astounding isn't it?), having good health is greatly prized.  Even more importantly, acting like you have good health is prized even more!  Too often that means that although people might be empathic when you get a diagnosis, the empathy quickly wears thin if you can't pull your weight or if you're asking others to do things differently for you.

Here's a specific example of how talking about this can be such a problem that it truly gets in your way.

In a recent conversation, my client was reflecting  on what led him to stop working.  Five years ago, he left his job and went on disability.  He'd been able to continue working for over 10 years with  increasingly debilitating symptoms (he lives with Crohn's disease).  But he'd often had to do a 'work-around' - - do his job differently or at a different pace.

Now he finds that he needs more income than he's getting from his disability policy and he's sorely missing working.  His doctor suggested he seems depressed.  And his wife told him he has to find something to do. He's 52 years old.

Thinking back to his decision to leave  his job, he realized that it wasn't the illness or symptoms.  He was fed up trying to 'defend' himself to colleagues and bosses - he hated having to talk about it so much.

When we explored the conversations that bothered him at his last job and looked at how it's not all that different in his personal life, he saw how isolated he'd become since this disease had grown worse.

The interpersonal habits he'd learned over a lifetime had worked well enough and he'd felt successful in all the key areas of his life. But illness required different things of him and he wasn't prepared.

"I'm a man of few words," he said when he described himself.   So how's that going for you, I asked?

Are you struggling with one of the top 3 I mentioned above?  Here are some suggestions.

In my book, Women Work and Autoimmune Disease: Keep Working Girlfriend, there's a chapter, "Talking About Your Chronic Illness".   It identifies some specific tactics you can apply to your own situation.

My booklet, "Are You Talking" , part of the Career Thrive Series, goes into even more detail about how to tackle this issue in your work life.

Finally, I often use another resource in my coaching work , "You Are What You Say" by Matthew Budd and Larry Rothstein  -- particularly  the chapter on linguistic viruses.

Hmm, I seem to think in 3's, don't I? What's that about?

Do you have any suggestions for other resources?  I 'd like to hear what you've found useful  and I know readers would welcome them, too.


Building on her experience living with chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind Joffe founded the career coaching practice, Dedicated to helping others with chronic illness develop the skills they need to succeed in their careers, Rosalind firmly believes that living with chronic illness does not preclude living a full and successful life.  Thrive, Don't Just Survive While Living With Illness.

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