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.

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“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?

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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.

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Affordable medical insurance  is a major consideration for many people, particularly those who live with a chronic health condition. Some believe that recent legislation, often referred to as  ”Obamacare”,  has fallen short of delivering on the promise of affordable healthcare for all citizens, and has instead placed the resources of the taxpayers at significant risk.

The Affordable Care Act   aims to prevent insurance companies from the practice of rescission, which means that they will no longer have the authority to cancel someone’s insurance policy even though premiums have been paid. This will prevent those with chronic health problems from being burdened with the medical bills that should have been covered by the insurance companies. Children with preexisting conditions will no longer be denied coverage, and adults with preexisting conditions will not be denied coverage if they have been without insurance for at least six months.

Beginning in January of next year, insurance companies will not be permitted to charge higher premiums for those who are disabled or have a preexisting condition. Lifetime dollar amount limits will also be done away with in most policies so that there will no longer be a limit on the amount of coverage policy holders can use in their lives. This would be of note to those suffering from a chronic condition.

One caveat for those with a chronic condition is the cap that “Obamacare imposes on flexible spending accounts. Starting in 2013, there will be a limit of $2500 that can be saved in these accounts. The accumulated savings will no longer roll over from previous years. This could put pressure on account holders to schedule their care around a calendar rather than optimizing their doctor’s visits and medical procedures to their specific needs.

Another issue is the use of flex accounts or health savings accounts (HSA) to buy over-the-counter medication. In order to use these monies to purchase over-the-counter medications a prescription will now be required. This will use additional flex account savings if those savings are used to pay for the portion of the visit not covered by insurance. In effect, it will cost quite a lot to use flex account savings to buy cold medicine or a common pain reliever.

According to statistics, 35%  of the people with a chronic health issue use 65% of the medical resources available. Changes in healthcare will have a national impact on the quality of care that these individuals may receive. There is significant risk that many businesses will be unable to maintain the cost of their plans, and the insured workers will be transferred to the individual state run exchanges. This might be problematic because the insurance companies are will not be required to cover preexisting conditions until 2014.

The cost of individual policies will increase significantly when coverage is mandated for those with chronic conditions. This has already happened in the states that have a guaranteed issue and require availability of insurance to everyone. The cost of an individual policy can be as much as four times higher in a state where they have a guaranteed issue mandate, and while this is good for those with chronic health conditions it increases the cost of care for healthy people.

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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.

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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.)

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But she won’t do anything that would cost money or wear her down even more physically.   She’s too afraid to look for a job.

Because she’s been reading my posts for years, she suggested I write about her story.

By her own admission, she’s swimming in guilt about what her job loss is doing to her family.  Especially since she’d been out of work for 3 years grappling with a debilitating pain condition.  She wrote, “ I’m a burden on my husband and kids.  I desperately want to find another  job but I can’t bring myself to do anything about it.  I’m afraid to fail.”

I get it.  I know healthy people who feel this way when they lose a job.   But for so many reasons, the  ’guilt’  from losing a job is a particularly heavy load to carry  when compounded with debilitating illness.

It’s not always true that doing something is  better than doing nothing.  But how can do nothing help here?  And just wanting isn’t enough even if it’s easy: “I want a job”.  Setting intention is harder: “I’m going to try to make this happen“.  Taking action is  risky and brave:  ”I’m going to commit my resources, time, money and energy to do what I can to make this happen.”

You might ask yourself this:  When I think about what I’m going to do with my resources, my energy and myself, am I making decisions with confidence and clarity or am I  making decisions from a place of fear ?

How is that going for you?

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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?

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She’s right that there’s not enough on my website or my blog about my work with people with chronic  pain conditions.  Nor do I have enough good resources.

The truth is that I’m immersed in several projects relating to people living with chronic pain conditions and have come across terrific resources.  But I haven’t posted this even though I know that I should.  As an entrepreneur whose livelihood springs from web-based marketing,  I’m doing an inadequate job of promoting my business.  And this  critical  to getting new clients.

I know this and, although I’m not happy about it,  it’s a decision made with intention.  I choose not to make the time because I’ve set my priorities.  And right now, this isn’t at the top of the list.

How about you?   How many tasks  are waiting to get done and slide further down the ‘to do” list?  Yikes, it’s especially true when holiday mode is in full gear.  That list grows so many pages I lose count and my energy saps just looking at it.

Do you beat yourself up, even just a little, when you think of what you haven’t done?   It’s so easy to do that but what a waste of time and your limited energy!

Yes,  healthy people struggle with their ‘to do’ list also.  But living with  chronic health challenges  makes it that much harder to get through the list.  There’s not much you can do anything about the fact that you’re never sure  if you’ll wake up feeling worse or better than when you went to sleep.  This often means that you can’t be sure what you’ll  be able to get done on a given day. That’s when you’ve got to reach into your inner tool box for what you can do.

Do you keep this tool handy?  “I can take charge of the way I look at this!”

As you think about what you have to do, ask yourself:  What’s going to help me get through just this day?  What is most important to you– meeting the project deadline or going out with friends to celebrate the season?  Do you have to write that last memo knowing that you won’t have time to exercise or food shop?  What will you have to ‘give up’ if you go to one more store to buy those gifts?

Whatever you choose, choose with intention, so you feel in your gut that you’re making the  choice.

We all make mistakes.  We all act without thought.  At the end of the day, forgiveness is powerful.  Especially when the person you forgive is you.

How’s it going for you?

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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

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