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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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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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