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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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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I asked Bobby what made him bring this up.   He said he didn’t know — maybe it was all the talk about people and illness.   When I asked if anything about P’s performance had changed, Bobby sat back to think about it.

Bobby described the changes he’d seen. P had taken more personal time off  in the past year.  P had used all his vacation days, which had never happened before.  And, P had refused a promotion.

When I asked Bobby if he had ever asked P how things were going with the illness, he said no.  He figured it was up to P to bring it up.  He didn’t want to intrude or invade P’s privacy.  Then, Bobby asked me if I agreed, since it’s my ‘work’.

I said that I didn’t have enough information to know anything for sure.  But in my experience,  some people won’t bring up illness even  after disclosure.  They worry that they’ll be perceived as complaining, or worse, as unable to do their work. Or sometimes, they just figure you’ll ask if you want to know.

Bobby  said he  might bring it up in their next one on one meeting.  He thought he’d just ask about it, in a neutral tone.  Sounded good to me.

That conversation came back to me  when a client talked about her boss who felt patronizing and intrusive.   Clearly, there are some minefields to avoid when you bring up the topic of chronic illness with a co-worker — or particularly someone you supervise:

• Don’t bring up “illness” when you’re dealing with a problem.  Wait for a  time  when the employee is less likely to feel that you are making assumptions because of illness.
• If you do ask about illness impact, focus on  work performance rather just life in general.  Your role at work is to be concerned with work.
• Ask how you can best be helpful.  Don’t assume your advice is wanted or needed nor that you can guess.

What do you think?  Would you find it intrusive or helpful if your boss asked you how you’re doing with your illness?  What might make a difference?

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Imagine this:  You return to work after missing 2 days of work due to a virus. Your supervisor calls you into her office and tells you that you’ve been sick a lot lately, you don’t seem to be taking care of yourself, and you should remember that you have (fill in your disease here).

Sarah and I spoke a few hours after this happened.  She told me that after spending the remaining part of the day trying to convince her boss that this wasn’t true, she was fed up.   She was ready to quit.

I understood how she felt.  But good thing she took a breath first.  She’d been unemployed for a year before landing this job six months ago.

Sarah knew that her supervisor, Nancy had a reputation for saying “the wrong thing” and alienating people who worked for her.  Until this event, though, Sarah had ignored the inappropriate or mean things that Nancy said. But this felt different.  Nancy’s remark felt like she had invaded Sarah’s personal space — crossed some boundary.

I asked if she had any idea what provoked Nancy’s remark.  Sarah said that her absence had meant that she wasn’t there to run a critical corporate event that she’d been working on for months.  Nancy had to step in for her.  This meant that Nancy wasn’t able to do her own work during those days.  Sarah took a breath,  saying that Nancy had been under a lot more pressure recently regarding her own “deliverables”.  Sarah became calmer when she thought about what might have been behind Nancy’s comment.

But she was still furious about what Nancy had said and implied about how she takes care of herself. The facts are that Sarah hadn’t missed any work or missed any deadlines because of MS.  In this first 6 months of work, she had missed one day of work because of a cold.  Her recent absence was due to a bad virus that was making the rounds in the office.  In fact, the CEO had been out sick earlier for a full week with this.

Sarah had spent a half hour defending herself to Nancy, pointing to the inaccuracies in her statement. But focusing on “truth” only led Nancy to dig her heals in deeper.  Discussion intended to change her ideas on this was futile.

Then Sarah realized that she didn’t care what Nancy believed.  She knew that Nancy wasn’t going to use any of this against her and her job wasn’t in jeopardy.  There was no good reason to insist on why she’d missed work.  But she did care that Nancy had crossed a line that mattered.

Sarah decided to have another talk with Nancy. She’d acknowledge that her absence had been a burden for Nancy and even if it was unavoidable and due to no fault of her own, she felt badly this had happened.  Then Sarah would set some boundaries around what she felt was appropriate discussion.  Their conversation should focus on Nancy’s expectations for Sarah and Sarah’s performance. It was not helpful or useful for Nancy to involve herself in Sarah’s personal life, regarding how to take care of herself.

What do you think?  What would you have done?  Has something like this  happened to you?

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Does this sound like you? Living with chronic illness and thinking about changing your career.  But haven’t a clue how or where to start.

Then my article,  “Career planning when you live with chronic illness”,  is what you need to get started. ( No surprise here – I outline  a strategic approach.)  It’s published  in this week’s  Job-hunt.org, ‘the web’s best job resource’  where I’m delighted to be a  monthly columnist.

But maybe you’re in a different spot. Maybe you’re currently employed but  wondering if this is the time to bail out of the workforce.  Are you managing people, reading about Steve Jobs and thinking, “Hey, why can’t I cut back the way he can?”  Vickie Elmer, columnist at glassdoor.com and The Washington Post, asked me my thoughts,  How to Know When Time Off Is a Good Thing”.   As usual, I had a lot to say.

I wrote more on this subject in my own post, Keep Filling the Bank. You don’t have to be a world class conductor to get the support you need but it helps to be liked and to add value!

All of this – - career strategy, when and how to talk about illness – - and more  in my career guidebook series, Career Thrive When You Live With Chronic Illness and my workbook, Keep Working With Chronic illness .  Check out these resources as well before you make any big moves.

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

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

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

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

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

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

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

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

How is this going for you?

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Chronic illness, unlike acute illness, isn’t static.  It continues to reverberate.

I’ve been writing about Maestro James Levine’s  (my post on grieving)  cancer and the  back injury/surgeries that have kept him from performing.

As it turns out, the man he replaced at the Boston Symphony Orchestra, Seiji Ozawa, will not be at the podium at Tanglewood this summer due to ongoing issues in recovering from esophageal cancer.

(OMG, Are we the only who see that working with a chronic illness  presents serious problems?)

Both men rank among the very top in the world in a highly competitive field.  But I find one lesson us mere mortals  can take from this:

When you live with chronic illness, one strategic move is to be as good as you can at what you do so you’re not easily replaceable.

These guys  were the best before illness. They had already filled the piggy bank with goodwill.  Their employers can’t wait for them to return to work forever. But they’ve built up a strong investment in sticking by while they try to get better.

Maybe you’re wondering:  But what can I do to be that person an employer does not want to let go — or see leave — when my performance suffers because of debilitating symptoms?

Have you considered  how you can be as good as you can at what you do?  Few of us are world class performers or  even “great” at what we do.  But sometimes our value is not only in what we deliver.

When you’re angry about difficult symptoms,  does it show?  Do you resent that your job is so difficult or what others aren’t doing to make it easier?  How’s that going for you?

On the other hand, have you considered how can you support others, be an even better team player and display your  strong work ethic?  It’s one way to  get the support you need from others when you’re struggling.   Can you be sure that support will be there when you need it?  No.  But you’ve at least got a better shot at it.

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Is the  health care reform bill a step toward ensuring that anyone living with chronic illness will  receive  “adequate” medical  treatment?

Or is it just more help for the healthy?

I don’t have the answer.  But I’m delighted that in the increased attention on the burden that chronic illness places on individuals and society when the chronically ill don’t receive the health care they need.

I’m no political sage. I  don’t understand  the  fine print in the new health care plan.  But I’ve heard  horror stories from chronically ill people –  clients and others – - who can’t  afford a specialist or pay for expensive medications.  Folks who are working and have some health insurance!

As I described in a recent post, you can be fired or lose  insurance benefits if you don’t disclose a medical condition before hire.  You can also not be hired or lose your job if you do.  Sorry if I’m stating the obvious, but we can’t expect legislation to prevent  unfair practices from happening.

The Massachusetts   health care reform program is  cited as a national model and there’s  the good, bad and ugly. Unfortunately, universal coverage does not entitle the chronically ill to  good or even adequate health care.

Back to my question.  Is this a  step toward better health care protection for those of us living with chronic illness – whether working or not?  At the least, we are justified in hoping so.

Will it prevent people from being fired when they disclose  a chronic illness – or even not getting health insurance?  I doubt it. There are only so many battles we can fight and much slips through the cracks.

Living with illness gives you the perspective that the unexpected and unpredictable happens.  That’s not necessarily a negative.  It can be a point from which to expand and keep hope alive.  I feel more hopeful today.  Do you?

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Naturally, as a coach,  I have more questions than answers.  But there is one guideline I’ve found is worth following:

If  symptoms get in the  way of doing the job as it is expected to be performed and it will be obvious from the day you start, you should disclose.

But there’s more to consider.  I discuss the pros and cons of chronic illness disclosure in your job as well as when, how and what to say in my book, Women Work and Autoimmune Disease: Keep Working Girlfriend and in my booklet, Are You Talking, part of the Career Thrive Series.

But a reader’s comment on a blog post (Job Interviews and Disclosure) made me realize that there’s another important factor.  She wrote that the fine print of her employer’s insurance policy says  that you can be fired or excluded from medical coverage if you don’t disclose an illness in advance.

I don’t think that all insurance policies say this.  But how do you find out prior to hire?  The “negotiation” phase make sense.  This is when you’ve been offered  the job and can ask questions and negotiate your “demands”, including seeing information about any benefits policy.  I’d be curious if any readers have asked about this at that point?

But that doesn’t answer the real concern a person might have about losing the job offer with disclosure.  I don’t have to tell you that there are no guarantees.  But as I’ve written so many times, you can be as prepared as possible with strategic thinking and careful planning.

Consider the situations in which this issue might come up.  Plan what you would say about living with this illness in an interview, a job negotiation or once hired.  Include how it impacts you and how it doesn’t.  Finally,  stress that you have managed it successfully  in your work life thus far.   Your confidence and strength will resonate more strongly than their concerns.

And if your  confidence about working with illness feels weak, get the help you need to build it up so it doesn’t get in your way!

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