A lucky few get a chronic illness diagnosis quickly and easily.  For most it's a long and difficult road.  Along the way, you might  wonder if you're being self-indulgent.  Maybe you even question your sanity.  It's easy to think that others do, too.

I spent several years living with painful but vague symptoms.  I went through numerous and often painful tests  searching for a diagnosis.  Each negative test result led me to question  myself.   Maybe this is in my head?  Maybe I'm hypochondriac?  (If you're wondering this, check out this list:   10 Signs You're A Hypochondriac)

Finally  "objective proof" that I had multiple sclerosis  showed up on a milogram (the gold standard 30 years ago).   I was delighted to have the confirmation!

I was 30 years old,  had been bedridden for months, had a bladder that was becoming increasingly useless and had lost vision in an eye. Yet I needed some dye in my bones to assure me that I wasn't faking it.  This memory makes me sad.

Chronic illness is a slippery thing.  Symptoms are typically invisible, come and go, and can get better and worse with no predictability.  It's hard to identify what you can and can't do at any given moment.  Clearly, a lack of  diagnosis makes this even worse.

And all this gets even messier when a person is unhappy at work.   I've had people ask me if I think they're making this up to get out of work.

My response is to ask if they think this?  I haven't a clue but they're clearly concerned.  Bottom line, diagnosis or not, it's easy to convince yourself that the problem is in your head.

That's why it seems to me that the only thing that can do about this is to  take charge of  your thoughts and behavior in response to symptoms.  Oh, and did I say that this takes lots of work, practice and time?

How is this going for you?

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Building on her experience living with chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind Joffe founded the executive career coaching practice, cicoach.com. 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.

Do you tell yourself your chronic illness would be more manageable if  you had more control over the rest of your life?

Do you believe that if you could find a job, influence your boss, or be more effective at work, you'd feel better?

Yet, do you feel powerless to take action, worried it might not be the right one?  Do you believe that the only thing you have control over are your own emotions,  so you focus on only that?

Chronic illness can do that.  Even the most determined people can feel powerless to impact their lives when unpredictable and difficult illness gets in the way.

But I humbly disagree that there's nothing you can do.  I fall frequently.  Poor balance and numb feet (from living with multiple sclerosis all these years) must contribute.  Last night, I took a really nasty fall - the 3rd in 6 months. This morning the pain was so bad I was sure I  had broken something. But experience told me it was muscle, not bone pain.   I forced myself to exercise lightly (stretching, small steps, shorter time) to get  blood moving.  Reading my email, I forgot how painful it is to move my right arm.  Writing a note to a client, I realized I could even type with the arm, although I didn't think so when I woke up!

I'm not healed - the bruises will grow and I'm limited.  But I don't feel disabled (from these injuries at least!) or sorry for myself.

Now I've read (through a fellow traveler, Kathy Ibettson, who produces a terrific newsletter about  multiple sclerosis items of interest) about a study that examined the coping mechanisms of MS patients living in Northern Israel during the Lebanese War affected their disease course.

The results show that " those who used 'direct coping and planning'  - preparing shelter areas, adjusting medication appointments, stocking up on food and medicine - did better than those who focused on the situation on an emotional level, using relaxation techniques, support from others or prayer."

"Patients who focused their coping on emotional well being when a more direct approach was necessary, suffered more flare-ups of the disease than patients who identified the challenges that the falling missiles were presenting, and regarded the situation as an opportunity for planning and direct action," noted Professor  Eli Somer, study author.

This means that people who took action to improve their situation did physically better than those who relied on internal, "transformative" experience.  Although this research was on patients with multiple sclerosis,  I suspect we're safe  generalizing this to all chronic illness.

Are you trying to figure out a new career, find a new job, tell your boss you can't work at this level?  Do you wake up thinking: Today I'm going to do something about this"?  But instead, bury your head under the covers.

How is that going for you?

You might ask yourself, "What action can I take?"  And if you can't figure that out or get motivated to do that, consider this  research from Stanford Medical School that shows that people with chronic illness experience significant benefits from coaching.

What works for you when you're in a difficult, dis-empowering situation?  How is it going?

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Building on her experience living with chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind Joffe founded the executive career coaching practice, cicoach.com. 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.

Even when the economy was thriving and there were more jobs than workers  (remember those days?), most people described work as stressful.  It meant fewer people doing more work with tighter deadlines.  And worst of all, blurry lines between time at work and personal life.

The demands have only gotten worse in this recession.

A young woman in her early 30's  recently expressed to me her deep resistance to returning to work.  After 6 months on disability leave, she said that she  believes that working will make her sick again.  She's afraid that she won't be able to stop tasks when the pain gets bad and that the inevitable pressure and unreasonable deadlines  will aggravate her overall condition.    She finished by saying that all of the people she knows are unhappy from the stress of their jobs.

I was surprised by her deep rooted fear and negative outlook, especially since there was much she enjoyed about her last job.  Yet she doesn't believe it's possible to control her sense of stress or influence her workload.  I was also struck that she doesn't know anyone who is relatively happy in their jobs.

If her experience is that relatively young and healthy people feel stressed and unhappy at their jobs, how can someone who lives with unpredictable health find happiness at work?  I don't have an "answer".  But let's explore it.

In Does Work Have You In A Stranglehold,  Maggie Mistral offers 3 tips for breaking the stranglehold of work.   This is useful because it challenges the way we view working.  But her tips assume that a person can take charge of her time. What if you don't think this is possible?

If you believe that you can't influence how you work or how much you work, how will you survive of decades of working?   If you agree with me that this doesn't seem like a useful outlook,  consider how you can develop your capacity to:

• Manage difficult situations before they blow out of control. It's much easier to set limits and persuade a manager that you need breaks or hard stops in the day while you're still a valued worker, rather than after you've messed up.
• Identify your limits. Even if illness means you're more limited in some ways, know what those limits are and be able to explain them - without anger or remorse.
• Create empathic relationships with others so they want to support you and work with you around your needs.  But don't stop there.  Look beyond yourself and notice what others need as well, including your boss.  You might be surprised by how healing this can be.

As I've written often, I  believe that working is good for you (Does Working Help You Be Healthy?).  It's the premise of my book (Women, Work and Autoimmune Disease: Keep Working, Girlfriend!).    I also work often with people who are looking for work so I know firsthand how hard it is to find jobs these days.  But I have no doubt that if you don't believe that you can work, you won't find a job.

What do you think?

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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?  Coaches are a great resource!  Why not "look" before you leap out?

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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.

Is being unemployed feeling like a chronic condition?  Chronic - it's not sexy,  exciting, or fun.  Worse, chronic means it's not changing and won't go away. Those of us with chronic illness know all about this chronic syndrome.  It weighs you down and keeps you from being "light on your feet".

So, how do you find hope when you're feeling your condition is  "chronic"?  Perspective. What do I mean?  Check out American World Soccer Cup Team goalie, Tim Howard.

Here's a guy with a very difficult to manage and off-putting chronic illness, Tourette  Syndrome.  Living with this, he's risen to world class athlete status.  He's the focal point of media attention that makes his visible, and to many oft-putting, symptoms very public.  FYI - I read somewhere that his mother said that she thought that playing soccer goalie, which requires supreme focus, helped his Tourette's symptoms.  He didn't twitch as much when he played.  My bet is he played often!

Few of us, even if we were healthy, have the stamina or determination of Tim Howard.  But I believe that there's usually something to learn from people who achieve the extraordinary that we can apply to our own lives.

When you look at your job opportunities and the employment landscape, do you think, " I'll never find work"?  Are you blaming it on a lousy job market, a difficult illness, your age or even the time of year?  That could all be true.

But -- and here's the thing -- can you find something that you are good at and you can do and work this angle as hard as possible?

OK - most likely you won't be playing for the Soccer World Cup or the NBA.  You might not get to be president of the company.  But your challenge is to get out of the chronically unemployed syndrome.  Can you do it?

Let's face it.  You can't do as much as you'd like to impact your chronic illness.  But you can take charge of taking care of yourself as best you can.  The same is true with your employment.  What are you going to do about it? 

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My Dad died last week, a month before turning 90.  Please.  Hold your comments of sympathy.  I'm not writing for that (although I'm sure your intentions are kind).  I'm writing to share what I've learned and to create a discussion that helps us learn from each other.

Dad's first "small" stroke, at age 72, was the beginning of a slow decline.  A diabetic, he periodically lost his balance or fell due to the neuropathy in his feet.  He hated and fought this loss.  By his mid 80's, he'd lost his reasoning and ability to hold a real conversation and had trouble walking.  In the past 3 years, he was wheel chair bound and demented.  (But he could still say, "I love you",  and give you his beaming smile.)

From his first stroke, while seemingly fit, he'd say, "'Don't get old".    But getting old wasn't the problem for them  -- Mom had severe congestive heart failure from age 74.  It was being ill.

Old age didn't stop my parents from doing things.  It was their failing bodies.  As is true with all of us living with illness, they each approached this challenge with the same response they brought to the rest of life.

I often wished Mom could have worked until she died.  I believe she would have felt better about her increasingly housebound life.   Yes, her professional life had been demanding and tiring and it probably wouldn't have been good to continue as she had.  On the other hand, she didn't feel as good about herself when she stopped working.   I wonder, had it been different, would illness have been easier to accept.

Dad, on the other hand, was happy to retire.  Work at it's best was an ego boost but it was also a source of emotional aggravation.   He loved just sitting around . The good news was that he ended his life in a facility with plenty of people with whom to talk who didn't notice if he made no sense.  He told his stories and was deeply loved by all.

So what have I learned from watching them die?

The focus of my coaching practice and my writing is on the value of work and why we should push ourselves to keep working even while living with bodies with diminishing capacity.   I realize this isn't true for everyone.  But my goal is to give tools and support to those who want the choice  -- to help them develop their capacity to make this happen.

Work should give us purpose and a sense of being valued for what we can offer.  We all need this, whether sick, old or both.  It's not easy to make it happen but I've grown increasingly clear that it's worth putting effort toward creating it.  I believe that work has made living with illness an easier experience for me and many others.  I also believe it will make growing "old" easier to bear.

What have you learned?

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Building on her experience living with chronic illnesses, including multiple sclerosis and ulcerative colitis, Rosalind Joffe founded the executive career coaching practice, cicoach.com. 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.

This month's  career collective bloggers question is:  "What should job seekers do now to prepare for interviews?"   Scroll down for thoughtful ideas and useful tips from my fellow bloggers.

I had a client who thought she was prepared.  She'd never had trouble finding work before.  Even in a bad economy, she expected unemployment would be short.  She had her interview clothes (both a suit and a pants/sweater version in winter and summer material!) set aside just for this. She updated her resume weekly with any pertinent activities.  She contacted her references regularly to make sure they were current and used social media and her networks.

Nine months of looking and she hadn't gotten a second interview.  But she stayed hopeful.  She felt as prepared as she could be  -- until the interview that showed her the holes in her prep.

I often write about living "positively" (e.g., 3 Things You Need to Move from - to + ,     Finding Opportunity in the Quicksand) .  Although the topic  sparks interesting discussion and comments,  I worry I might be creating the wrong impression. (Oh, scroll to the end to find out about the Mother's Day special.)

Following my last post, more readers unsubscribed citing content as a reason. Now, I don't mind if people don't agree with me.  I write to create conversation and stimulate thought and I hope for new ideas and challenge.   But one "unsubscriber" emailed saying that my words seem to "blame the victim".  She wrote, "I didn't create my disease."

Ouch.  That's far from my intention.

In fact, nothing makes me angrier than when someone implies that we cause our illness.  I'll never forget the "friend" who told me I should be less stressed since that must be what's creating the ulcerative colitis.  Or, the colleague who said, "Multiple sclerosis is a nervous system disease but you don't seem anxious or nervous - so how'd you get it?"

Does that seems like a scrambled chicken/ egg thing or what?

OK - we all have stories like that.  You might read this cool article (You Make Me Sick, The Science Creative Quarterly).  It debunks the notion that our thoughts/feelings create disease.

That said, I do believe that there's power in being able to harness the way you think and retrain your brain. You can retrain your thinking if it's getting in the way of  living your life as best you can- illness or not.  One reader's comment led me to read about neuroplasticity, the science behind this.  (It's good to know that science backs up with I've seen work for myself and others).

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If you're wondering how you can do this, what questions to ask yourself or where to start, check this out:

MOTHER'S DAY OFFER:  Do you want to work with a coach who gets what it's like to live with chronic illness and can help you achieve greater job satisfaction?

For the month of May 2010, I am offering a special deal to all blog readers  (you don't have to be a mother!)

When you make an investment in your career and sign up for 3 months of career coaching with me, you receive 50% off the standard fee for 3 months.   (That's a $450.00 savings!)

Note:  You must have a chronic illness or chronic condition and you must be currently employed or actively looking for a new job or career.

Want to know more?  Email me, Rosalind@cicoach.com, and put Mother's Day Special in the subject line.

Chronic illness can foster a bad attitude. Have you noticed how negative thinking creates negative behavior?  Now flip that idea and you're into the positive psychology school of  thought.  I'm skeptical about  'quick fixes'  for tough, long standing behavior.

But from my own experience, you can retrain the way you think. It takes 3 things: determination, hard work and patience.

When I returned to work after several years of  illness-induced unemployment,  I knew the toughest part for me would be keeping a positive mental attitude at work.  I'd always been able to stay upbeat about my health yet I'd get very negative about work.

But I could no longer afford that attitude.  I challenged myself to change my thinking.  I did.  And that has been one of my proudest accomplishments in my professional life.

No doubt it's easier for some to take charge of their thoughts than others.   Most of us have to adopt new practices and work long and hard to change how we think about things to create new behavior.

Recently, a client was talking about her anger at work.  She'd asked for certain accommodations that she believed would allow her to move from part time to full time work.  Her request was rejected and she's deeply angry.   Her anger about her illness -- and other life difficulties -  have surfaced with this.  Very understandable.  But now her bad mood at work has created worse problems.  For the first time, she's getting negative performance feedback .

Working from my workbook with The Pulse,  an exercise I created, she's practicing to be more self observant and slow down her responses.  It's not a quick fix.  It might not help her keep this job but she can learn to understand her experience and manage her emotions and thoughts better for the long haul.

Living with illness presents the challenges, frustrations, loss and opportunities. The same as healthy people face. But because we've lost so much, we have to work harder to make the most of what is available to us.

When you're in pain or fatigue, it's tempting and easy to be angry or sad.  How much does  that influence your behavior?  Does it get in your way?  What can you do?

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PASS THE WORD:

Do you want to work with a coach to achieve greater job satisfaction? For the month of May 2010, I am offering a special deal to all newsletter subscribers:

When you make an investment in your career and sign up for 3 months of career coaching with me, you will get 50% off my regular fee for 3 months.   (That's a $450.00 savings!)  And you get my workbook ($40), pictured above,  for free.

Note:  You must have a chronic illness or chronic condition and you must be currently employed or actively looking for a new job or career.

Want to know more?  Email me, Rosalind@cicoach.com, and put May Special in the subject line.

Do you live with debilitating chronic illness that has led to significant life changes?  If you're nodding "yes",  most likely you've felt a strong sense of loss.

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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