Really though, is that in your best interest?  Does communicating differently require that much effort?

“How do I take a break when I’m exhausted but my supervisor is breathing down my neck waiting for work that was due two days ago?”  asked Sam (name & details have been changed)

Responding to his question with a question (typical coach),  I  asked Sam if there might be another way to view this.  Silence.  Trying a different approach, I asked if could imagine his boss’s  perspective on the situation.  He was still stumped.  Clearly I hadn’t asked the right question, yet.

Instead,  Sam repeated how badly he needed his  “power naps”:  10 minutes,  at his desk, every 2 hours.  And he followed that up, again describing how negative his boss acts when he sees Sam doing this.  Sam is understandably angry at being treated this way.  He can’t see why his boss ” doesn’t get it” .  He’s playing the same tape in his head leading him to the same place each time.

According to  Sam,  everything at work was fine until a year ago when the chronic fatigue syndrome (cfs) , after being “quiet”  for a decade, became worse again.   Now  he was habitually about two days late on every project.

Sam  told his boss that he ‘d become sick with cfs  in his yearly review one year ago, shortly after he became sick again.  He also said that he wouldn’t be able to keep up  the same pace because cfs makes him so tired.   Sam thinks that he did what he was supposed to do and that should have been enough.  They never spoke directly about his health again.

In our first call, Sam told me that the good news is that his work is so good that his supervisor  needs him too much to fire him.  The bad news is that his supervisor, who used to leave him completely alone, now  ‘lurks’ over him and drops hints that Sam’s  work is too slow.   Sam resents that his boss “… doesn’t understand that I’m doing the best I can”.

In our last call, Sam told me in that he’s worried he could lose his job.   A co-worker had told him that people were complaining about his failure to meet deadlines.

As he describes himself,  Sam has been operating as he always has.  And that behavior had worked fine for him — until now.   But chronic  illness is a game changer.

Sam recognizes that if anyone is going to change this, it’s got to be him.  It’s his job on the line.  Sam’s real strength comes from recognizing this.  He felt boxed into a corner.  But rather than continuing to blame someone else, he realized he needed to make a different move.

In this case, it was about what he hadn’t said.  His conversation with his supervisor hadn’t gone far enough.  He had made an announcement without any clear requests.

I suggested that he could make clear requests and create reasonable expectations that he can meet.  I referred  him to a very useful book, You Are What You Say, by Matthew Budd and Larry Rothstein (my copy is so worn it’s falling apart).  I particularly like their  “10 Linguistic Viruses”.  (For more on this, read my post, Talking about Chronic Illness)

When it feels like you’re in a situation with no moves, one move you can always make is to find a way to expand your view.

Bookmark It

Hide Sites

“Can you tell me how I should look for a new job when I’ve  been told that I have to leave my job because of my bad health?”  

I’d say that’s a tough one, wouldn’t you?  Esther is angry, feels totally alone and is really scared.  Seems understandable to me.

As it turns out,  Esther (not her real name and all facts have been changed to protect the ‘innocent’) wasn’t told that it was   “bad health” that led to her dismissal.   When I suggested that she think about what was actually said, she realized that nothing was said or written about her debilitating chronic disease in her dismissal meeting.  In fact, her supervisor wrote that her work was very good and she got high marks for performance.

So what did they communicate?  She is not sufficiently reliable  for this position because:

1. She frequently leaves the office for unpredictable amounts of time  to go to unexpected medical appointments that always take longer than she predicts.
2. The frequent unexpected sick days are disruptive.
3. Her doctor’s recent stipulation that she can only work 8 hour days, rather than the necessary 12 -14 hour days,  makes it impossible for her to perform at the high level required.

Esther works for a large consulting firm that’s  known to ‘eat their young’.  She’d considered and rejected demanding ADA accommodations.    She’s afraid that if she does, they’ll  relocate her within the firm to a job  far below her talents, or that she’d be marginalized completely if she stays in her current job. Worst of all,  based on what she’s seen happen to others, she’d burn her bridges  and won’t get the good recommendations she needs.

Esther, diagnosed two years ago with a rare blood disorder  (3 years after starting at this firm), has a combined social work and law degree with hefty loans left to repay.  She has two months left to find a new job.  At that point, she’ll be unemployed and without a pay check.  So far, she hasn’t found anything.

This isn’t an unusual story in my world.  In Esther’s favor is her skill set, her talents and degrees.   She’s a valuable commodity and should be able to get a job with more reasonable hours, even in a difficult job market.  Also in her favor is that she’s young (29), unmarried and can relocate if necessary to find the right job.

What’s not in her favor?  Her natural expectation that a double degree from a top university should entitle her to work at a ‘top’ job.  Her belief  is deeply embedded.   She had also assumed that she’d get a good job with good pay that would allow her to easily pay off her hefty  school loans.  And, that was all happening, as planned.

Until disease  ”destroyed her choices and her life  ”  (her words).

Esther’s  biggest challenge is in  re-setting her expectations.  This is hard, I know, having spent a life time doing this.  But that’s true for all of us who live with anything that is:

• Unpredictable (you never know when it will get worse or better),
• Debilitating (gets in our way of doing things) and,
• Chronic (it might get better but it will never go away completely and for sure).

Esther has to find a new job, a new career – something different.  But before she can do this, she has to accept what her life is now so she can develop the resilience to bend with the punches and live the life that she wants for herself.

I’m not saying this is easy.  Not even close.  Is it possible?  I think it is. Do you have any better ideas?

Bookmark It

Hide Sites

I’ve been writing about working while living with chronic illness for more than 10 years.   People ask me how I come up with topics?  Really?

Think about it.   When was the last time you found a character in a book,  play, movie or t.v. show who was dealing with chronic health challenges?  This is fertile, untapped territory. Really.

I’m not talking about dying or death here.  That’s dramatic, finite and although a very painful topic, it is much easier for people to get their  arms around.  That can make it a good topic for a story.  But chronic bad health?  Dreary, wears people out and no closure.  Where’s the story line here?

I’ve been in a ‘phase’  with symptoms rearing their ugly heads and new medical problems popping up.  In times like this, my body doesn’t request, it demands my time and attention. The  phone calls, appointments, procedures and self care are time consuming and draining.

And as I faced this yet again,  the light bulb again illuminated the  message loud and clear for me:

WORK  MATTERS  and WORK  CAN  HEAL (your sorry body)

What do I mean?  It’s actually more obvious than you’d think.   We’re almost trained to complain about work.  But when your body, the source of your pain and struggle, is letting you down, work can be one place where you can continue to feel good about yourself because you have something to offer the world.  Or as a client said to me recently, “When I work, I don’t just feel like a slug.”

Over the past months,  I got to the point where  talking to family and friends about my health status wore me out more.  I felt like a broken record and it was boring even me.  This is always a confusing and isolating place in which to be and many of my clients talk about it with  sadness.  How do you connect with people without discussing what’s really going on?  Yet you have nothing really new to say.  It’s hard to break this cycle.

When I’m working —  on the phone with clients , developing project work and writing- – I’m neither confused nor sad.  I’m a productive person with useful ideas.  Even if I’m not at my best (and I’m clearly not at my peak performance at these  times),  good enough can be a reasonable standard. Let’s face it – - few  perform at their best all the time and often with less of a good reason

But this can only happen if the work you do allows you the flexibility you need to manage your health.  And, you’re not feeling pulled in every direction and worrying you’re letting everyone down.   In today’s workplace, everyone feels pulled and driven and there’s little slack.

As I write this, I know that I am among the fortunate.  I can afford to be self employed and I can afford good health insurance.

I just returned from my 2nd outpatient procedure in two weeks and  I’m living with a stimulator implant.  I feel grateful:

• That there is this device that allows  me to live more easily and might prevent future illness.
• That I have insurance that pays for this expensive procedure.
• That I have a supportive husband, children, siblings and other family and close friends that are there for me.
• That I have work that allows me to maintain this erratic schedule and, most of all, sustains me.

But as I say this, I’m thinking about those who don’t have these options.  I not here to improve healthcare or insurance options. But I have hope that in time, people living with chronic health challenges like mine  will have more options than choosing to work for themselves or to not work at all.  Maybe I’m foolish.

I need a nap.  But before I go, do you have ideas for work that has this kind of flexibility?  My clients  look for ideas for work they can do.

Bookmark It

Hide Sites

Rosalind:  I found your book so compelling.  It brought me back to my own years of diagnosis and the early days of living with illness.  What made you decide to write this book?

Gail: I decided to write this book because I couldn’t find the information I needed in one place when I was first diagnosed. I was too dazed and frightened to understand what my doctor was saying, much less ask him any questions. I garnered a fact here and another one there from my personal research and reading, but it was taking forever and I couldn’t fit the pieces into a whole. There were books available on the topic but they were too technical, too vague, too old or cookbooks and how to live with Chronic Kidney Disease. None of those was what I was looking for. I wanted a book that explained in simple terms what these tests were, why and how I could and should exercise and why I needed this diet in addition to enough sleep. I’d been a non-fiction writer for decades, but never thought I’d be writing for my own purposes. It was clear after about a year of looking that the only way I was going to get the book I wanted was to write it.

Rosalind:  What does continuing to work do for you and your own relationship to illness?

Gail:  It’s pretty easy to fall victim to “being a victim” or, in this case, the patient. I couldn’t see my life as one continuous regime of taking care of my health and that’s all. Don’t get me wrong: I do take care of myself. I follow the renal diet, exercise, take the prescribed medications and supplements, sleep enough and pay attention to any other ailments, but that’s not all I do. When I act, especially dinner theater, I’ve had nothing but wonderful experiences with directors making certain there was non-iced water available for me when everyone else was drinking soda or sports drinks. My chair at the college has made it possible for me to teach one two month accelerated course each term. As for writing, I’ve been lucky enough to be able to focus on the blog. I find I can easily integrate my illness with these jobs, plus with my roles as fiancee and mother. It took some fumbling in the beginning, but with people being so supportive, I was bound to get it right eventually. I think if I hadn’t continued to work (although I retired three times already prior to being diagnosed and just wasn’t happy not working), I would have become this victim. I’m thankful I have my jobs to keep me from becoming monomaniacal.

Rosalind:  Has living with illness had an influence on your own relationship to your work?

Gail:  Absolutely!  I’ve mentioned that I teach an accelerated course. That means almost three hours at a shot. I’m very careful to take a ten minute break in the middle of the class. The students are performing better in the latter part of the class with this break in place. I also see that my taking small drinks of water throughout the class encourages them to do the same, again enhancing their performance in the latter part of this very long class. So my disease has turned out to be a boon for my students. I find I prefer film – even with its long hours – to stage work since being diagnosed. I can handle a long day of filming with days off in between while scenes I’m not in are being shot better than I can working four straight days in a show after weeks of four or five day rehearsals. Film work gives you lots of opportunity to rest: the same scene can be shot from many different angles and you need to wait for the cameras and lighting to be adjusted for the new angle. There’s always water at hand and, in the last few years, lots of fruits and vegetables. I am not a vegetarian, but many actors are these days. It makes it easier for me to choose the amount and type of fruits and vegetables I can eat right on the set. If it’s a company I haven’t worked with before, I’m sure to bring water and appropriate food with me. My favorite job when I’m feeling extra tired is the writing. I do this in my home office so can take breaks to rest, have a pantry full of foods I can eat and even a coffee machine for my two cups a day. Hmmm, seems I’ve written about food, water, and rest. I don’t exercise on the job anywhere. It’s too disrupting on a set or in a classroom, but I do manage to do it afterward by either shopping in a mall or big box store so I can zoom around at top speed for at least a mile or ride the stationary bike when I get home while I memorize a script or review a video for my class. On days when I go to work late or leave early, I also like to use walking tapes that include weights or bands. I’m so much more aware that it is a bit harder for me to work, so I choose jobs I like - a lot.

Rosalind:  Is there anything else you think my readers would benefit from hearing from you?

Gail:  From the reaction to the book and the blog, I’m convinced that people want the book. The question is how do we get it to them? Money is an issue for everyone these days. That’s one of the reasons I’ve had the book converted to digital. It will cost the reader less. Some e-readers allow you to share the book with others. I’d urge you to do that. I think if you have this kind of information and someone else with Chronic Kidney Disease doesn’t, it’s got to be shared. I wish I had the money to just give the book away, but unfortunately I don’t.

And, even if you requested the book at your library, take the time to look at the list of helpful organizations, websites and support groups in it to see if any are right for you.

Gail Rae, author of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, wrote the book she needed when she was first diagnosed.  Patients,their family, friends, nurses and doctors have been reading it since.  You can order it at: myckdexperience.com, Amazon.com or Barnes and Noble online.  Both Amazon and Barnes and Noble also carry the digital version.

Bookmark It

Hide Sites

Struggling to keep your job while living with a chronic health condition?

Then you might want to tune into Downton Abbey, Season 1,  to see what to do and what to avoid .

Maybe they should make a series called, “Working and Living With Chronic Health Problems”?  I’m doubtful the scriptwriters set out with this intention but they really nailed it with Mrs. Patmore and Mr. Bates.

Let’s start with Bates.  While interviewing for his new job as Valet to Lord Grantham, he really wants the job.   Grantham, who  seems eager to hire him (they’d been in the Boer War together), expresses worry whether Bates can manage it.  Bates replies with confidence that he can. (Meanwhile, as Bates stands there looking perfectly normal, we viewers haven’t a clear what they’re referring to.)

But when his ‘colleagues’, the rest of the staff, grumble that Bates won’t be able to carry his weight, we realize all isn’t as it looks.   When Bates falls, it becomes clear.  Bates has one very bad leg.  As he continues to drop platters and have trouble,  the others are grumbling louder.

So, how does Bates handle this?  With some wise moves:

1. He says in front of all the staff that he can do his job and they don’t have to worry that he can’t.   Whether they believe him or not, he tells them he’s not expecting them to work harder for his sake. He’s also telling them he knows what he faces and can manage.
2. When he falls in a very public moment, he accepts help getting up. But he keeps his feelings in check so others don’t have to feel more uncomfortable.
3. He is exceedingly kind and respectful to others, particularly staff who are mistreated poorly by others,.  This earns him allegiance and loyalty  (except from Thomas who resented Bates got the job over him – but clearly he’s just a nasty piece of work.)

Bookmark It

Hide Sites

It’s a new year and you’ve probably made plenty of  useless resolutions. Why not think about this?   

What can you do to GET RID OF THE SHOULD and FOCUS ON THE CAN DO?   I ask you, what can be more important than this  when you live with unpredictable health?

It doesn’t matter whether you’re self-employed, employed by other or unemployed.   Setting expectations that you can meet is critical to creating satisfaction — your own and others. 

Let’s look at my own recent experience.   Two weeks ago, I’d planned to write ablog post before I started my week vacation.  When t time was running out and my ‘to do’ list was still pretty hefty, I ditched whatever wasn’t a ‘must do’.   I went into vacation feeling good about taking the time off. Yup.  You could say that I felt satisfied with myself.

On my return, I was determined to get the blog post done because it’s my  policy that no more than two weeks pass between posts.  But other work had piled up and my health took a nose dive (not major but annoying and time consuming).

Which is why I went to bed last night very tired from my recent health issues and frustrated, angry and feeling sorry for myself  about the things that weren’t  getting done.  I desperately needed an ‘expectation re set.’

Whether you’re dealing with your boss, colleagues, those you supervise, clients or your self.  You fall into a black hole  focusing on what you can not do rather than figuring out what you are able to do right now.

I developed an exercise called The Pulse for my clients and I’ve described it in detail in my  Workbook, Keep Working with Chronic Illness.  The Pulse is designed to help you stop with your stories, the blame, etc., and put your energy on what’s going on.

How are you doing with setting expectations that you can meet?  Are you willing to do a re-set when it’s necessary?  It’s not easy but can you plan for what it will take to do this?

OK.  I’m moving on in my ‘to do’ list.  How’s today going for you?

Bookmark It

Hide Sites

Q:  What made you write this book? 
A: More than anything, I just wanted to tell the truth about IBS. There are so many myths about IBS:  that it only causes diarrhea, that it’s not very painful, that it’s a mild inconvenience, that it’s a psychological problem, that it’s caused by stress…I could go on. It’s such a misunderstood problem, and sufferers themselves are often too embarrassed to talk about their symptoms openly. Luckily for me, I think the embarrassment wears off once you’ve had IBS for a few decades!
I wanted to write about what it’s really like to have IBS:  how it affects every single aspect of your life, how bad the pain can be, how difficult it can be to travel or to work.  But I also wanted to offer some hope, because my IBS has been much better over the past few years due to a diet and supplement regimen that works for me.

I was also disappointed at the range of IBS books currently available. The vast majority of IBS books are written by doctors, and some of them are excellent, but it’s not the same as having someone say, “I know how you feel, because I’ve been there.”

Q:  What do you think is the hardest part of living with invisible chronic illness while you are  growing up and developing who you are?

A: One of the most difficult things for me was the way that the illness made other people see me. When you turn down every travel invitation, every weekend away, when you can’t drink alcohol and can’t eat at certain places, when you cancel plans at the last minute or seem miserable and tired when you do turn up, then people begin to see those things as part of your personality rather than part of your illness. If that’s how you always behave, then that must be who you are.

I still struggle with this sometimes, and I want to scream “It’s my IBS that’s making me this way, it’s not my fault!”  But things are better now that my friends and family understand more about the limitations of IBS and how it affects me, and I hope that people no longer think that I’m naturally grumpy and dull!

Q:  At what point did you start thinking about how living with illness should impact your career/work direction?

A: I went through a terrible time in my first ever full-time job when I was in so much pain so often I thought I was going to have to quit and go back to live with my parents. I managed to struggle on with the job, but I hated the travel I had to do for work because it would always mess up my intestines.

My second job was a little better as there was no travel involved, but my ultimate goal was to find a way to work from home. I knew that even if I could just about cope with office life I was never going to be happy there – too much anxiety about access to a toilet, too many afternoons spent in pain. If I could work from home then I would have my very own toilet and much more control over my hours. I was very lucky to find a way to work from home over the internet, and this has made my life so much easier.

Q: Do you have any suggestions for others about what they should think about in doing this?

A: To be honest I realize how lucky I am in being able to work from home; not everyone has this option open to them. But I think the most obvious mistake I made, looking back, was to be so secretive about my illness at work. I tried to keep the entire IBS situation to myself, when I would have been much better off being honest about it and asking for help if needed. I suspect, for example, that I would have been allowed to stop traveling entirely for my first job if I had just explained why, but I couldn’t bring myself to do it. I should have been honest and trusted my employers to help me rather than hiding away in fear.

Q: Is there anything else you want to share here?
A:  I’d like to say to anyone with a chronic illness that I hope you are feeling well today, and that you find the strength you need to cope with whatever life throws at you, be it your symptoms, your doctors, or those pesky healthy people who like to give us so much advice!

Sophie Lee’s book,  Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, is available — http://www.ibstales.com/sophies-story.htm

You can also follow her on Twitter: http://www.twitter.com/ibstales

Bookmark It

Hide Sites

What does it take for a person with chronic illness to continue working ?  And, if possible, to do so in a rewarding way?  I’ve wrestled with  this personally for over 30 years, and more recently in my professional life as a coach/writer/activist of sorts in the past 10 years.

A recent New York Times article profiled a  self-described “high powered executive” with schizo affective disorder .  Against all odds, she discovered for herself that the best medicine for her is an intense work environment.  The very idea defied what everyone around her believed.

The article cites recent research on a small group of high achievers living with this diagnosis.   ‘“It’s just embarrassing,” said Dr. Stephen R. Marder, director of the psychosis section at U.C.L.A.’s Semel Institute for Neuroscience and Human Behavior. “For years, we as psychiatrists have been telling people with a diagnosis what to expect; we’ve been telling them who they are, how to change their lives — and it was bad information” for many people.

Sound familiar?  So what can the rest of us learn from this?

1. There’s much to learn from others living with a chronic health condition.   Don’t be fooled by a diagnosis.  In my coaching practice, working with more than 300 people living with all forms of chronic illness, I’ve found that most disease symptoms bring on some debilitating level of fatigue or pain.  And it’s these defining experiences that hurt performance.  Isn’t that what matters?

(If only researchers shared more of their findings among different disease and branches of medicine,  science would move much more quickly to finding sources and cures of disease. )

3.   You are responsible for figuring out what you can and cannot do, what is ‘good for you’ to do and what harms you. Yes,  that’s hard.  When your healthcare practitioner (your psychiatrist, surgeon or acupuncturist, you name it)  tells you what you ‘need’ to do to ‘take care of yourself’, you should listen and try it.  But as you test this out keep an open mind to question if this is right for you.

3.   Stress comes in many forms and each of us has to figure out what it means .  We all  have different tolerance levels for stress.  It affects people differently and it can affect each of us differently at different times.   Let’s say you believe that your job makes your health worse because it’s  ‘stressful’.  Ask yourself:

• Does this mean that  all work is “stressful”  for you?
• Are you working in a high stress environment (everyone finds it to be so) or is this your unique response to the stress that exists there?
• Is there another way to look at the ‘stress’ so it doesn’t feel harmful?

Bottom line?  Life is a teaching opportunity.  What are you learning from it?

Bookmark It

Hide Sites

Sites like Twitter, Facebook and LinkedIn can land you a job if used correctly — or ruin your chances if mishandled. The good news for those living with chronic illness is that these social networks make it easier than ever before to build a personal brand, and establish and grow your network from your computer or mobile device.

The first step to leveraging these tools is to get acquainted with each one and establish your network. LinkedIn has positioned itself as the professional’s social network and should be your primary focus when looking for a job. Set up a LinkedIn profile, add your work history, current position and connect with your colleagues by uploading your email contact list. Research the companies you are interested in; some may already be advertising positions on LinkedIn. If not, look for someone within your network who is connected to the company in some way and politely follow up with them. Also consider joining alumni, professional and interest groups to expand your network and your access to jobs, as people frequently post listings on group discussion boards.

While creating your profile, keep in mind that potential employers will likely peruse it. For those with chronic illness, a question often raised is whether or not to keep your illness private. Depending on your situation, you may decide to keep this private or you may list it if you are looking for a position that is in some way related. You should ask yourself if your illness has any impact on the jobs you are looking for. If not, why include it?  This is also important to remember when joining support groups through LinkedIn and Facebook as these groups will appear on your profile.

Facebook is not as obvious of a resource for job hunting as LinkedIn, but it can also be a rich avenue. There are number of tools which leverage your existing Facebook social network to connect you with jobs. IntheDoor.com is a site that compares your network on Facebook with current job listings to see how you can best leverage your contacts to gain access to those positions. A similar site, BranchOut.com, allows you to make your Facebook profile more professional and search a database of more than 3 million job listings.

Twitter can also be useful for establishing a personal brand, expanding your network and engaging with others in your industry. Fill out your profile completely and find people to follow, like colleagues, journalists and influencers in your field. Tweeting your thoughts on issues relevant to your professional interests and links to worthwhile articles is a good way to establish your presence on Twitter. Again, whether or not you choose to comment on your illness is up to you, but remember that unless you protect your tweets, anyone can read them. You can also find jobs on Twitter by searching hashtags like #jobsearch or #salesjobs, and by following the Twitter feeds of companies you would like to work for.

Using these tools in combination with one another will maximize your chances of success. Finding a job always takes effort, patience and perseverance. Social media will not eliminate these necessities, but it can make the search easier and broader for those living with chronic illness.

Erica Moss is the social media outreach coordinator for the online Masters in Nursing program at Georgetown University, which has one of the nation’s leading nurse practitioner programs. She’s used her Twitter presence to help land a job, and outside of work, Erica is an avid dog lover who loves photography and meeting new people.

QUERY for HR Directors:  We’ve got a grant to study the effects of a coaching intervention on people working who live with chronic illness.   Employees who participate would receive coaching services at no fee.  We ask nothing from a partner organization other than to communicate our message about this study to their employees.   Are you an HR Director or work within organization that you think would be interested in ‘partnering’ with us?  For more information:  Alyssa.McGonagle@Wayne.edu

Bookmark It

Hide Sites

After more than 10 years of coaching people around living with illness and their work life, blogging 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 of this from your own.  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.

Bookmark It

Hide Sites