“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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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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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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The difference between a successful person and others is not a lack of strength, not a lack of knowledge, but rather a lack of will.  

Vince Lombardi

Motivation and will power fascinate me. Maybe because I didn’t have much of either when I was young and then they each blossomed.

Illness in my late 20′s  was transformational for me.  My gut response to devastating disease shaped how I responded to events from that time on.  From that dark place — in which I saw parts of me I didn’t know existed –   I was able to create intention.  It was an easy route to find motivation, direction and will power I didn’t know I had.

Webster’ s defines motivation as ‘incentive or drive’ .  It defines willpower as energetic determination.   In a recent The Boston Globe article, Goal Oriented,  Deborah Kotz explored new research on willpower.

“The reason for all this interest?  Willpower, it turns out, is one of the most important predictors of success in life.”

Among other things, the article notes that research shows that those who scored highest on self control at age 3 were far more likely to be healthy and financially successful adults.  No way would I  have scored high on self control at age 3 — or even 15 (not I who always  read the end first and snatched the frosting from the all cupcakes in spite of my brother’s wrath!).    It wasn’t until I was in my 20′s that any hint of who I would become started to emerge.

But I don’t think I’m typical.   I’ve noticed in my coaching practice that those with a track record of success  do better at marshaling the motivation and willpower  they need to face the challenges of chronic illness.  Even if resilience and hope falters, they’ve already developed the muscle memory.

So, what’s it been like for you?  Do you  “hide under the covers” and collapse when the going gets tough?  Or is there some part of you, some voice, that always pulls you up to face the day?

How do you face tough times, difficult situations, your unhealthy body?  Do you think you always had the tools to ‘push through’?

FYI – The header comes from this quote:  They can because they think they can. Virgil

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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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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Tomorrow we’re going to euthanize our beloved goldendoodle, Iko.   It’s very, very sad. He’s 7 1/2 years old and in his prime.

The difficult thing about a dog that has developed a chronic illness that the vet tells us ‘fatal’ (diagnosis: protein losing enteropathy)  is knowing when it’s time to say goodbye.  I know about living with chronic illness and I know how it can wear you down.

I’ve had a hard time knowing when it’s time to say enough and goodbye.  My tendency toward seeing the positive has prevented me from seeing how sick he’d gotten.  Lucky, my husband had a clearer eye.

I was a kid who was went from being terrified of dogs to desperately wanting one.  But my brother was allergic to fur and I got a bird. I guess I wasn’t dedicated enough because it died when I forgot to feed it for a week.

When I brought home a dog I’d found on the street in my first college apartment, my roommate informed me she was allergic to dogs. But not cats. So the dog went to a shelter and I got 2 cats.  They lived with me for many years through many changes.

I couldn’t possibly get a dog while the cats were living.  I knew they’d go nuts.  But when they died, I resolved this was the time.  My husband and I were looking for a dog in the want ads the week I found out I was pregnant with my first child.  He wisely put his foot down saying living with multiple sclerosis and having a baby was enough for our family to handle.

I finally got  my first dog, Tasha, when our youngest child was 3.  She was a malamute we found in a rescue center.  Over the years, we got other dogs and often had 2 at a time.

I tried to choose dogs that my children would love and that would be good to them.  I believed that animals would bring a bright spot into our lives.  In my mind, having a dog in our home normalized what I worried could seem abnormal and difficult for our girls.   I like to think it worked.

I’ve loved each animal in my life but Iko has held a special place in my heart from the day he arrived on a plane from Wisconsin.  We got him when I was 53 and feeling as healthy as I’d ever been.   I wanted a big dog to walk long distances with me since I no longer had colitis and the MS was so much better  – - and I actually could walk.  I wanted a dog that would hang out with me and be my loyal companion since I was working in my house full time and mostly alone.

Funny how it worked out.  He was the hardest dog I’d ever had to train to simply walk on a leash.  He pulled me down in his exuberance (and his fear of strangers) more than once giving meat least one concussion and several mashed bones along the way.  He’s so loving that he can’t let you leave without tugging on your jacket – no matter how hard I tried to train it out of him.  He’s been my best buddy and in my lowest moments, he’s made me laugh and reminded me that my life is good and full.

Animals can do that, can’t they?  I’m generously paraphrasing  from one of my favorite books, Marley and Me,  “Part of having a dog is learning that you’re going to have to say good bye one day.”

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