So what’s this about?   I asked myself,  what does it mean ‘to give advice’?

• My definition:  telling a person what to do.
• An online definition:  advice, n., recommendation regarding a decision or course of conduct.   

I could see how what I think are  ‘suggestions’ could be perceived by others as advice.  I think there’s a distinction here worth making.  My intention with these posts is to encourage you to think about a challenging situation differently.  And, in doing so, to be better able to improve it.

Think about this:  Have you experienced loss?  Do you fear more of the same?  You can do something about this but advice, recommendations,  won’t turn it around.  Let’s face it, when living with chronic illness, there are no ‘right/wrong’ moves.  Too many variables and unknowns.  Life is too complicated for simple solutions.

Do you consider the  suggestions I offer, play with them, roll them around in your mind?  If not, why not?   If you’re stuck doing this yourself, find someone — a friend, a coach — to help you work it through.

For instance, when I explore disclosure,  I suggest describing how symptoms impact you,  rather than talk about how they feel.  That’s just  one option.  Play with it, twist it around and  see how it goes for you.

Another example is working or not working.  This can be a biggie for most of us.  I recognize that it’s not always desirable nor even possible  to work when you live with illness.   I’ve written in my book and in these posts that research and my personal/professional experiences support the idea that work improves a person’s health.

But there are many exceptions to this statement.  Only you can figure out where you fit within this spectrum.

My intention and hope is to write something that motivates you to take a closer look at your situation through a different lens.   The stories I create are culled mostly from my clients,  and I use them as examples.  These short posts aren’t prescriptive.  They can’t possibly address everyone’s situation.  I create stories, culled mostly from my clients,  and I use them as examples.

Go ahead!  Adapt them to work for you.  Seek help  from others when you’re stuck.

If you don’t agree with an idea, share it here.  Tell me and others what you think,  what  works for you.  Share how you live  – and work -  with the challenges of chronic illness.

QUERY:   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

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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.

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Soon after, several times during our call, a client asked if other people struggle as she does at working with an illness.  That’s when I realized that my knee jerk response, that of course this is harder for people living with illness, isn’t obvious to everyone.  Even people living with illness.

So, here’s my definitive statement on this. Yes,  work and illness are a tough duo!  Look, I’ve found there’s enough “meat” here to write a weekly blog, produce a 40 page workbook, 3 booklets on career, co-author a book and get hundreds of inquiries monthly about my services.

But maybe the question should be what makes this so challenging?

Before going further, I’ll offer a definition for chronic illness:  “…an illness that is permanent or lasts a long time. It may get slowly worse over time. It may lead to death, or it may finally go away. It may cause permanent changes to the body. It will certainly affect the person’s quality of life.“   There are many definitions.  Do you have one that’s better?

Experts agree that chronic illnesses typically (not always) share 3 characteristics:

1. The symptoms are invisible to others.
2. Regardless of diagnosis, the symptoms and course of disease varies from person to person.
3. Regardless of diagnosis, it is impossible to predict the course of illness or what will trigger worsening or improvement of the condition.

You can learn much more when you read  my book, Women, Work and Autoimmune Disease: Keep Working Girlfriend!

FYI – I regard chronic illness, chronic syndrome or chronic condition as the same for our purposes. They each can create severe and limiting pain or fatigue with symptoms that impact a person’s life in the same way.

So, what about these 3 characteristics makes working such a challenge?

• Unpredictable. People living with a chronic illness find that even the most solid back-up plan can fail because it’s impossible to be sure when and to what degree symptoms will flare.  And that can become a big problem when you’re in a work situation in which reliability is critical.
• Variable - Unfortunately, there are no guarantees in the world of chronic conditions.  The course of illness,  severity of symptoms  and response to treatment vary dramatically within an individual, from person to person and among  different diseases.  Even with a diagnosis, there’s no road map to rely on.
• Invisible – Some people find this to be a relief, particularly at onset.  They don’t want to nor feel prepared to discuss health problems, particularly at work where  value often relies on ability to deliver. But invisible becomes a problem when symptoms impact your ability to perform and others notice the changes and/or are affected by them.  This can force your hand to disclose. And even after disclosure, the need to talk continues.  Others don’t know your limits unless you tell them.  And too often, they forget or minimize your situation unless you remind them.  You bear the taxing burden for good communication.

The truth is that most of us are completely unprepared for all that comes with bad health.  Isn’t illness  something that happens to someone else … and only to old people?   Being too tired or in pain puts you “out-of-synch”.  Life becomes much more complicated than you ever could have imagined.

Before you despair, here’s the thing.  Do you think you did a pretty good at getting your life “in order” and making things happen prior to illness? If you’re nodding yes, then most likely you’ve got the life skills you need to manage this. And if you haven’t done so well on that score thus far, here’s your opportunity to develop this competency.  The question you might ask yourself is: how can I tap into this?

I’m no superwoman.  I don’t believe that developing multiple sclerosis at 29 and ulcerative colitis at 40 was a blessing in disguise. But when faced with living a life with this much illness, I was forced to develop muscles I didn’t know I had.   I realized that I had to develop into a more capable, well-balanced and intentional person to manage the unpredictable, variable and invisible diseases I live with.

How do you get there?  Start with your foundation because illness tests us at our core. Develop your capacity to respond to disappointment and setbacks with resilience and hope.  Search for the resources, tools, mentors and coaches for your team.

Most importantly, wherever you go and whatever you do  with this, remember you aren’t alone.  Whatever work you manage to do is only good if it bring you a sense of competence and satisfaction and allows you to be more than your illness.  Work and illness – a difficult but doable duo.

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My clients primarily live with chronic illness.  For the most part, the challenges they face fall into the same “categories” that healthy people face.  The story and degree of difficulties might shift.  Over the years, I’ve developed some favorite places “go t” places when I’m working with clients  around career transition or career development.

1. Transitions: Making Sense of Life’s Changes Strategies for coping with the difficult, painful, and confusing times in your life,  By William Bridges  – the 25th anniversary edition is out and that tells you how strong this book is. This is often the place I start when working with someone who is going through any kind of difficult shift or loss in their life, not just career.  Clients with illness find that this speaks to them on so many levels and that’s a great starting place to accepting and embracing what has to be done.  Bridges explores what makes change so difficult and offers concrete suggestions.   He has written subsequent books that are also quite good, including Making the Most of Transitions,with Susan Bridges.
2. New Job, New You: A guide to reinventing yourself in a right new career, Alexandra Levit.  This is timely because it speaks to where our society is right now regarding career dreams and the marketplace.  It offers examples and specifics but primarily serves as a motivator that this can be done.  Many of the folks with whom I work have to reinvent themselves (I did!) because their symptoms prevent them from being successful in their jobs.
3. The Right Job, Right Now, the complete toolkit for finding your perfect career, Susan D. Strayer.   It sounds too perfect and it is but there are some solid assessment tools that I use with clients.  This is helpful for the “do-it-yourselfer” who wants to figure it out.
4. I’d Rather Be Working, A Step by Step guide to Financial Self Support for People with Chronic illness, by Gayle Backstrom. Although it’s written in 2002, a lot of the information is still very relevant.
5. Keep Working With Chronic Illness  Workbook, by Rosalind Joffe.  I’ve included this resource because healthy people have told me that they find it useful, too.  I developed this, though, because I couldn’t find a career tool that reflected the challenges and needs of people living with disabling symptoms. Among other things, it includes tools for identifying how symptoms impact your needs and  jobs skills as well as career assessments and job search tools.
6. Resume Writers: I didn’t know that this is a profession, separate from career professionals until recently (twitter actually).  I’d always written my own resume and didn’t realize there were options that would make it more effective.  But more than ever, this is an absolute must.  With the increasing need for the right search terms in a resume, the of qualified people trying to get the same job, a resume is a critical tool to opening doors.   Anyone with  an unusual background, such as career change, job gaps, degree/experience mismatch particularly needs to frame this strategically.  A good resume writer should be able to do this.  Oh – and if you’re wondering where to find the right match for you, we’ve got some great bloggers on this list who can help you.

Career Collective Bloggers:

• If your industry does not participate online, you can lead the way, @Keppie_Careers
• Your Best Job Search Resource? You!, @WalterAkana
• In a Job Search, Knowledge is Power, @barbarasafani
• Jump Start Your Job Search Now!, @resumeservice
• Favourite Resources for Jobseekers, @GayleHoward
• The Best Job Search Tool Ever, @careersherpa
• Find What You Do Best, Know Your Stuff, and Connect, @chandlee
• 27 Recommended Blogs for Entry-Level Job Seekers, @heatherhuhman
• Invaluable Resources for Job Search Success, @heathermundell
• Favorite Social-Media Resources for Job-seekers, @KatCareerGal
• Canadian Resources for Job Seekers, @EliteResumes @MartinBuckland
• A Self-Empowering Job Search Resource, @KCCareerCoach
• Covering your bases: 5 ultra-useful online career resources, @LaurieBerenson
• Favorite resources for Job seekers, @DawnBugni
• Top 3 Resources for Job Seekers to Position Themselves as Experts and Increase their Visibility, @expatcoachmegan
• Time as a Career Resource: How “Not” to Squander It, @ValueIntoWords

• Favorite Internet Resources for Jobseekers, @ErinKennedyCPRW

• The Facts Behind Why LinkUp Is the Most Revolutionary Job Search Engine Available to Job Seekers, @GLHoffman

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I’ve noticed a trend.  Over the past few years, the number of  inquiries that I get from people looking for help with their career has increased.  But until recently the mix was pretty equal between the currently employed and unemployed.

Over the past year,  the requests  I get are overwhelmingly from the unemployed. I’m wondering:  what’s that about?

Yes, the unemployment rate is high.  But most of the people who write have been unemployed for a year or more.  Nothing about my online presence – my website,  my content or the press I get – has changed.   Trying to learn more, I checked out another career/illness site, the Cancer and Careers website  (see my most recent suggestions to a nurse returning to work and requesting accommodations).  The questions  seem to reflect a  demanding and inflexible workplace.

Clearly, a declining economy puts strain on employers to get more from employees.   Are employers  cutting staff back and  taking advantage of  workers with few options?  Does this lead people with illness to leave the workforce rather than risk asking  for flexibility and accommodations?  Do you see this happening?

When you’re already struggling with illness,  it’s harder to see your options than your limitations.  You lose hope that you’ll feel better again and be able to work.  You become convinced that working is making you sicker and the best thing for you is unemployment.

But what you might not know or even believe is that bad health often doesn’t stay static.  And, some jobs, supervisors and org culture are worse than others.  Finally, once you leave the workforce and have gaps in your work history, it’s  that much harder to return.

Why don’t people seek help to stay employed?  Why not “look” before  you leap out?

FYI – My book, Women Work and Autoimmune Disease: Keep Working, Girlfriend! got a nice review from a working mom on the blog Living It Loving It.

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But have you  experienced grief?  I thought about the importance of grieving after reading two articles recently.

The first was a news article about James Levine, the  Metropolitan Opera and Boston Symphony Conductor.  The other was a post, Self Image and Living with Rheumatoid Arthritis, written by  RA Warrior, a blogger.

Although neither article focuses on grief,  RA Warrior’s post notes the grief  from her changed self image.  Maestro Levine has had cancer and back surgery that have led to being unable to work – (“Conducting life and illness”, my post.  Now he needs  a  second scheduled back surgery.  The articles about Levine’s  surgery focus on more canceled performances and the possibility he could lose his job with the BSO.   But I have a hunch this extraordinarily successful man must feel loss – -  lost time, missed performances and opportunities and, looking ahead, the possible loss of his life’s work.

In her seminal book on grief, On Death and Dying , Margaret Kubler-Ross identified 5 stages of grieving with each stage necessary to pass through before the next.  In my book, Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, (p.78),  I describe the role grieving plays in accepting  living with illness.

Chronic illness isn’t static.  It’s an on-going, ever changing experience.  It can mean missing an event, losing a job or being unable to walk on your own.  Unlike a permanent loss, such as death, illness goes on living with us, side by side, rarely staying the same.

I’ve found that the challenge over 30 years has been to find a way to grieve and not let that take over my life.  I’ve learned to grieve in “contained” spaces.  These are the moments that you take to to pay attention to the thoughts and feelings — to notice and listen.  That gives the grief room to be heard rather than stuffed nor ignored.

Loss and grief.  The former is an event but the latter is what we must do.  How do you do it?  What works for you?

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Naturally, as a coach,  I have more questions than answers.  But there is one guideline I’ve found is worth following:

If  symptoms get in the  way of doing the job as it is expected to be performed and it will be obvious from the day you start, you should disclose.

But there’s more to consider.  I discuss the pros and cons of chronic illness disclosure in your job as well as when, how and what to say in my book, Women Work and Autoimmune Disease: Keep Working Girlfriend and in my booklet, Are You Talking, part of the Career Thrive Series.

But a reader’s comment on a blog post (Job Interviews and Disclosure) made me realize that there’s another important factor.  She wrote that the fine print of her employer’s insurance policy says  that you can be fired or excluded from medical coverage if you don’t disclose an illness in advance.

I don’t think that all insurance policies say this.  But how do you find out prior to hire?  The “negotiation” phase make sense.  This is when you’ve been offered  the job and can ask questions and negotiate your “demands”, including seeing information about any benefits policy.  I’d be curious if any readers have asked about this at that point?

But that doesn’t answer the real concern a person might have about losing the job offer with disclosure.  I don’t have to tell you that there are no guarantees.  But as I’ve written so many times, you can be as prepared as possible with strategic thinking and careful planning.

Consider the situations in which this issue might come up.  Plan what you would say about living with this illness in an interview, a job negotiation or once hired.  Include how it impacts you and how it doesn’t.  Finally,  stress that you have managed it successfully  in your work life thus far.   Your confidence and strength will resonate more strongly than their concerns.

And if your  confidence about working with illness feels weak, get the help you need to build it up so it doesn’t get in your way!

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A reporter was interviewing me about chronic illness and working.  She was very surprised when I said, “The single most important factor that helps a chronically illl person continue to work is to work in a flexible environment.”

She asked me what “evidence” I have to support this.   (Have you noticed how popular that word has become lately?  It seem that it’s only true if it’s “evidence-based”.)  I responded that I have anecdotal evidence —   I’ve seen it myself and heard it from others.

No.  I haven’t found any  research linking people who continue to work while living with a chronic illness and the flexibility of their workplace (have you?)  Unfortunately, it’s not something that seems to be studied.   (Anyone want to do this — or fund me to research this?)

I told the reporter that I’d written about this issue numerous times (in my book, Women, Work and Autoimmune Disease:Keep Working, Girlfriend! and more recently, this post, Who Needs a Flexible Workplace?)   I’m not an expert nor a researcher.   Just a believer.

In the meantime, we’ll  rely on our experience.  And, the studies that support flexibility for all workers (Making Flex Time a Win-Win).

FYI – I’ve just read a great book on “reinventing” your career, New Job, New You by Alexandra Levit.  I like that she offers good stories of people who’ve done this and has solid tips.  Although it doesn’t touch on chronic illness issues,  you can do the translation.

When I’m working with clients who are changing careers or even their jobs,  I encourage them to make flexibility a top priority.  I’ve noticed that this isn’t obvious to those with new disease onset.   It’s hard to imagine how chronic disease waxes and wanes, requires periodic doctors appointments often during the work day and can have different symptoms that come and go.  But live with disease for a few years and you can see that this is one unpredictable beast that can upset any schedule.

Do you have any reason to think that this isn’t important?  I’d love to hear it.

Yes.  We must have easy access to high quality health care.  But just as importantly, we must be able to find a decent job at a living wage that allows us to take care of our health.  And the code word here is flexibility.

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Living  with chronic illness isn’t easy, under the best of circumstances.

And working can seem like it makes it tougher.

But the alternative is usually worse.

It was a dear friend’s 60th birthday party.  And, once again, my body was in revolt. I was feverish, tired,  nauseous –  with  numb feet and awful balance  (multiple sclerosis symptoms that get worse when I have an infection).  It was  kidney infection after too many urinary tract infections to count after living with multiple sclerosis for over 30 years.

When my husband, Jake, and I left early, they were rockin’ to,  “Dance to the Music”.   I was a sad puppy.  Yes, it helped to cry and vent to friends and family.  But I was still sick and my symptoms were still there.

Even though sleep didn’t improved how I felt, without a reason to get out of bed, I’d have stayed there.  And that wouldn’t have been good  – -  for my psyche or body.

Lucky for me, my job  “called”, and my day had  structure.  There were client appointments,  articles to write and projects to develop.  Nope, I wasn’t at the top of my game.  But I had enough to offer to make it worthwhile.  Mid week, the infection subsided and I returned to baseline.  Just another incident in living with chronic illnesses.

But I have no doubt that work, a schedule, things I had to do, created distraction and motivated me to keep moving. (I even exercised lightly!)

Is work a prescription for everyone?   Clearly not if the situation creates miserable pressure or the people are toxic.  But does that mean you have to quit altogether?

It is a key ingredient for better health, especially with chronic illness and waxing/wanting disabilities.  Not convinced?  This website,  return to work knowledge.org , offers evidence-based research that working promotes better health for the chronically ill.

And even if your situation is relatively good, it’s easy to dream about not dragging yourself to work on the bad days.  Are you at the  “tipping point”,  thinking, “Enough.  I just can’t go on.” ?   We explore just that in my book,  Women Work and Autoimmune Disease: Keep Working, Girlfriend! and describes how some people face this.

Over the past seven years as a career coach for people with chronic illness,  many people have hired me to help them get back into the workforce.  They left for various reasons.  But usually it was because they thought they were too sick to work or were in a difficult situation.   .  But  studies show that it’s harder to go back to work once you’ve left due to illness.  And the longer you wait, the harder it gets.

Are you wondering whether or not to stop working? 

With the New Year approaching and resolutions on your mind, you might ask these questions:

• Do I want illness to be a part of my life  rather than all that I am?
• What is the “long view”, a strategic approach, so I’m proactive rather than reactive?
  
• Is there something I can do now to be better prepared for what might be ahead?
  

What have you done to figure these issues out?  How is it going?

Are you looking for help in developing the skills and capacity to address these questions?   If yes, contact me to find out more about how I  work with people, like you.

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Here’s a question I get frequently but you wouldn’t have heard 20 or even 10 years ago:  Is self employment the best option for people living with chronic illness?

It seems that most employed people dream of working for themselves.  It certainly sounds  freeing and creative, doesn’t it? No one makes a more compelling case for self employment than Pam Slim in her blog, Escape from Cubicle Nation, and in her wonderful book with the same title.  If you want to read a clever and insightful post on the topic, GL Hoffman writes in the recent Career Collective posts, “The Life of an Entrepreneur: Is it for You?”

But what about if you live with impairments and waxing/waning chronic illness? You know that you have to think about these issues a little differently.  But how.

Well, as they say, “the devil is in the details”.  Here are some of my thoughts.

Self employment generally means  you’re solo.  For many, that’s a real plus.  A coaching client with Lupus  discovered the challenge in working solo when selling Tupperware.   She expected this kind of low key sales would give her  the flexibility she didn’t have when she was in computer sales.  But she  still had to show up at the Tupperware parties she’d scheduled and her salary depended  on her ability to be alert, friendly, outgoing and able to sell — even when she had no energy and in pain.

Furthermore, a lack of a guaranteed paycheck can be a source of anxiety for anyone, especially if you have others to support.  But it can be even worse if you  already face an unpredictable life due to your health. A client with Fibromyalgia  went to work for himself thinking that his wife’s income would give him the cushion he needed  to cut back  his work when necessary.   But  not having a reliable paycheck made him severely anxious.  He couldn’t take a vacation or sick time, worrying tha he’d lose business and be unable to pay his bills.  Working for himself, he pushed himself harder than when he was employed.

I’m self employed in my home office and it works for me.  I’ve always been extreme on the self motivation scale, I’m a born “creator”,   I love developing my talents and new ideas and I work my best when I can do it on my own schedule.

But while I’ve benefited from being able to adjust my schedule to my health, I’ve had to learn to live with an uneven and reduced salary.  I sorely miss the social interaction of an office and feel the loss of being part of a team who shares ideas and goals. I don’t miss my difficult bosses but I do miss the supportive ones who mentored me and helped me to grow.

For more about  self employment when chronic illness is part of your life , read Joan Friedlander’s  chapter,  You’re Fired  — by Your Body or Your Boss in our book, Women, Work and Autoimmune Disease: Keep Working, Girlfriend!

What have you found –  from working on your own?  Or staying employed?

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