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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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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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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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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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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The health benefits of yoga have been well documented for years and known for centuries in some cultures. Recent research suggests that people with chronic illnesses may benefit from yoga. Of the many different forms of yoga, some are more beneficial for certain conditions than others. It doesn’t take a psychology degree to see that the meditative benefits of yoga open the doors to a more positive outlook on life, but some of the physical elements of the exercise inspire more investigation. It may take some time to discover which one works best, but most doctors agree that yoga is a great option for those dealing with chronic issues to relax and help mentally ease the pain of their conditions.

Yoga and Chronic Conditions

Patients with chronic conditions ranging from cancer to persistent back pain are turning to yoga classes in increasing numbers. Chronic conditions can cause patients considerable stress or fatigue. This may inhibit the effectiveness of treatments and result in additional discomfort. Many doctors and health care professionals recommend yoga for exercise, meditation, relaxation, and relief of stress. Yoga basics are easy to learn and can be easily incorporated into a busy life.

Bringing Yoga to Work

Yoga can help with mental health, mitigate treatment side effects, and improve how the body handles pain and stress. All of this certainly applies at work. Chronic conditions, especially back or muscle-related pain, can make a day at the office uncomfortable and stressful. Many people think they don’t have time for yoga, that classes are too expensive, or that they’ll be too tired from work to practice. However, yoga can easily fit into your busy schedule.

Most techniques can be learned quickly and practiced for a short period before or after work or on a break. Classes can also be taken on weekends, and the techniques practiced during the week at home. Yoga classes don’t have to be expensive. Some hospitals allow patients to form unofficial yoga groups. These are often made up of patients with similar conditions, thereby establishing an additional support system for patients coping with the same difficulties.

Another way to make yoga more affordable and accessible is to form a yoga class on your own. It doesn’t have to be limited to people with a chronic condition, though that may be a means of helping you form a sympathetic community for support.

Choosing the Right Type of Yoga

There isn’t just one kind of yoga. Some types focus on movement, while others are interested in concentration and inner focus. Accordingly, a particular patient’s chronic condition might prohibit against practicing certain forms of yoga. For example, multiple sclerosis patients should avoid heat yoga, due to heat intolerance. This tendency of symptoms to worsen due to sustained exposure to heat would definitely become problematic given the increased temperature in which heat yoga is practiced.

Consider the particular characteristics of different yoga disciplines and how they might fit with the conditions of a given chronic illness:

• Hatha Yoga is recommended for beginners and is best for those who can’t overexert themselves. Gentle movements are performed while keeping the primary focus on breathing and holding poses. This form of yoga is good for stretching in a way that’s not too strenuous on the body. This would be good for patients with some forms of cancer who may tire easily due to treatment.

• Iyengar Yoga is a heavy form of yoga using blankets, blocks, and other objects. This form of yoga is recommended for those who need to work on balance and coordination, and would be suitable for patients with MS.

• Kundalini Yoga is an advanced form of yoga that may be beneficial to cancer patients as a form of exercise. The focus is on maintaining posture and breathing while in different poses.

• Heat Yoga (Bikram or Moksha) is recommended for patients with chronic pain in muscles or joints, like lower back pain. This style incorporates poses from other forms of yoga in rooms heated to about 105 degrees Fahrenheit. Proponents claim the increased heat helps remove toxins from the body while stimulating muscle and tissue.

Many patients report feeling more comfortable with a marked reduction in symptoms and side effects of their conditions after yoga sessions. Yoga tends to give patients a feeling of hope and optimism that helps make coping with a chronic condition just a little bit easier. It should be noted that yoga or other methods of relaxation and meditation are not meant to be a substitute for a patient’s regular medical treatment. Yoga will not cure any chronic illness, but it may reduce suffering and make a patient more comfortable, receptive to treatment, and promote overall health.

Allison Gamble has been a curious student of psychology since high school. She brings her understanding of the mind to work in the weird world of internet marketing with psychologydegree.net.”

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That was  my story.  After 25 years of working in multimedia  (photographer, producer, production company v.p. sales , public school communications teacher and college professor), I threw in the towel when I became too sick  to work at any full time job.

When I wanted to return to work after a few years, I realized it had to be  different.  I couldn’t find work that could accommodate my health in my former career – not the early 1990′s at least.   So at age 43, I set out to develop a new career.  I knew I had a wealth of experience that I could draw on –  even if I didn’t have a clue what that meant.

But now you don’t have to do it all yourself.  Here’s one site that’s devoted to this very idea: Encore Careers.  In a recent newsletter, Marci Alboher offers 5  Online Resources for Encore Career Seekers.  Although the suggestions focus on “retired” folks, you can learn a lot from reading this information.   Adapt it to your situation and ‘mine’ the gold that’s there.

Check out the site because there’s lots of good information.  It targets older workers who want to or need to find new career options.  But think about the issues that an older, unemployed worker faces: skills no longer relevant, negative stereotypes, employment gaps.  Do you see some overlap?

Let’s face it.  Chronic illness is not a ‘hot button’ issue’. But, as boomers age in an increasingly difficult job market,  the older worker is going to become more vocal.   We might as well jump on and share the band wagon.

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I just celebrated my 60th birthday and a client (I’ll call her Laurie) was asking  what I ‘d done.  Describing the party we had with loving family and friends, I spoke of how great it felt to be healthy for it.  But now, just 2 days later, I was experiencing symptoms  – -some I’d never had before and some too familiar.

I rarely discuss my health challenges or how they affect me unless I think there’s a benefit.   But this time, my frustration was bubbling on the surface and I shared my sadness.  I described how the onset of pain and fatigue had taken the glow right off.

At that, Laurie started to cry  and then talk  — about her own anger and sadness in living with rheumatoid arthritis (RA).  She hadn’t spoken of this in the 8 months we’d worked together.

Turns out that Laurie had just come from her yearly performance review (she’s a paralegal).   She’d been relatively healthy over the last year but  recently, new pain made it difficult to use her dominant hand.

In her review, her boss said that she understood that Laurie was working as hard as she could and she appreciated that the work always got done.  But her boss was having a tough time with the unpredictable nature of Laurie’s symptoms.   Then her boss  acknowledged that she knew she liked control and the unpredictable challenged her and made her irritable with Laurie.

Laurie got the yearly raise she’d received for the past 10 years at this job.  But she left that meeting in a state of shock.  She couldn’t believe that her boss had said these things to her and worried about her future at this law firm.

Laurie has lived with RA for 6 years.  She needs this job to send her kids to college.  She worries that if she loses this job, she won’t find another one.   But she struggles daily with the pain, the unknown and all that living with chronic illness does to a person.  There are days that she just wants to give up and not face other people and their disappointment in her — or her own.

How do you live with never knowing how you’re going to feel?  Or how you’re going to manage in a situation?

There isn’t a blueprint nor easy tips and if someone tries to sell you that line, ignore it.  But I can tell you from my own experience, it takes:

• vigilant self focus (without self absorption) so you notice what you’re experiencing so you can manage it,
• desire for self discovery and renewal so you continue to be resilient and live with hope,
• patience with yourself and others when you face disappointment.

I’ve also experienced in my work how imperative it is to have someone with whom you can talk.  That person should  challenge you to be more than you thought you could be –  a therapist or a coach.   That’s the best investment you can make in your health.

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Sam Fuld isn’t a household name — unless  you’re a baseball fan.  In case you didn’t know, until a few months ago,  he “… owned the dubious all-time distinction of having batted more than a hundred times at the Major League level before recording an R.B.I. His reputation, to the extent that he had one, was for running heedlessly into outfield fences face first.”

But in the last 2 months, he’s led the American League in batting average and stolen bases.  At 29,  he’s become a superstar. Late bloomer?  Go figure.

But most interesting (at least to me) is that when he was 12 years old,  Little Leaguer Sam was diagnosed with type 1 diabetes.  And not long after a major league pitcher with diabetes visited his team to talk about how he’s managed to live a successful career even with this challenge.

“It was maybe a five-minute conversation, but it did mean a lot to me,” Fuld said of talking to Gullickson. “It was seeing with my own eyes a guy who could make it.”

Fuld’s coach has said his amazing moves on the field aren’t what has captured the imagination of fans. he said fans love Fuld not because he’s Superman — but because he plays like Clark Kent. “There are a lot of average Americans who can identify with this fellow,” says Maddon. “He’s hard not to like. He’s Everyman.”

Here’s what I get from his story :

• Play to your gifts but  do what you love.  Fuld was an economics major at Stanford but chose baseball.  I’ll bet it wasn’t because he thought it was a more prudent financial move but because his passion motivated him to work really hard against ALL odds.
• Find mentors and mentor others.   Most people don’t understand what it’s like to live with a chronic illness- – especially in a young person.  Look for those who live successfully with what you face and make them your North Star.
• Figure out your own yardstick for success.  There are many who will give you advice about what to do or how to live your life. But you’re best bet is to develop your own voice and listen to it.

I love the idea of Fuld as Clark Kent.  I’m tired of super men or women and really admire those of us who just do the best we can what what we’ve got.  What do you think?

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