Does anyone really question that living with chronic health problems makes it very, very difficult to hold a job?   I don’t know about you, but no one has ever argued this point with me.  Probably, because it seems  obvious to most reasonable people.

I’m not implying that we’ve got a lock on the challenges behind maintaining positive and successful employment.  I realize that health problems can have a negative impact on a person’s social/relationship life (just look at the 75% divorce rate among the chronically ill) .

But employment impacts financial health, social networks and relationships, self management and organizational skills, and self esteem.  Hmm, that’s just about all aspects of our lives.  The problem is that employment (particularly being employed by others, not self) means being evaluated on what, when and how you deliver.  When your ability to perform job tasks is highly variable and unpredictable,  delivering on your commitments can be challenging, wearing and fraught with anxiety.

I’m not suggesting we have a  ‘pity party’.  But I am crying out for a more robust conversation about this issue since it’s rarely part of any discussion on living with long term chronic health conditions.   It just makes no sense when staying employed is crucial to a person’s quality of life  (check this spot-on post in Huffington Post – note point #2).

Why am I ranting about this yet again?   Because I just listened to a client describe a series of conversations  that left her worn her out from frustration and anxiety (and she’s not a woman who typically goes there).  It struck me how clueless we all are on how to talk about this.

  • Conversations with her doctor whom she has seen 2 times:  When she told the doctor that the unpredictable and highly debilitating symptoms were making it difficult to keep her job, he told her that she couldn’t ‘give in’ to this.  When she asked what she should do, he responded: “I don’t have any idea but maybe you should find a different job or stop working altogether if this is making you sicker. ”  — which she didn’t say it did).
  1. Conversation with her boss with whom she has worked for 5 years:  She explained that her symptoms were getting worse,  she wasn’t getting an important part of her job done and she thought they could talk about options.  Her boss responded, “There are no options.  This is her job and she has to get it done.  End of story.”
  2. Conversation with her best friend:  She was crying as she told her friend how frightened she is that she’ll lost her job.  Her friend responded:  “Everyone has problems at work and you just have to keep your mouth shut and not talk to everyone about this.”

These kinds of conversations would wear anyone out .  It’s especially exhausting when you’re dealing, managing and talking about debilitating and unpredictable health.

I recently updated my booklet, “Are You Talking”  but I’m wondering, what have I not addressed?    What would you say in any of the above conversations?




8 Responses to “3 Conversations about chronically difficult health”  

  1. 1 MD

    I’ve never figured out what to say to those things even after having been ill for a long time. The “just change your job” conversations would me up in particular. During an especially bad period, I was employed in an organisation which made multiple accommodations for me, allowed almost unlimited flexibility in scheduling, and gave me lots of support. At around the same time, a friend of mine with a chronic condition was fired from her job because her boss refused to make any accommodations for her, or offer her any options.

    While this was going on, I had multiple conversations with doctors who said – “if you are worried about your job, it must mean that it is wrong for you, you must find another one”. But not a single one of them had any suggestions about what kind of job conditions would be better over the ones that I already had, and prevent me from ending up like my friend.

    I still get anxious when I think about that time. I am managing better now, but if my condition gets worse again, I would have no idea how to manage this, because no amount of reasoning and explaining helped in the past.

  2. 2 howitis

    The problem is that in this day and age, we really can’t have these conversations about working with chronic illness. Nobody’s listening.

    It’s 2014, and as a wise man once said: “It’s a dog-eat-dog world, and I’m wearing Milk-Bone underwear.” Hyper-capitalism, selfishness and greed rule the day. Bosses hold all the power, workers have almost none. With dozens of able-bodied and healthy applicants for every single job opening, what chance does a worker with chronic illness have at getting a job, much less getting accommodation?

    Here’s how it is where I used to work. A co-worker asked if she could have a slight accommodation; she wanted to come in an hour earlier and leave an hour earlier, so she could take her son to speech therapy (he had a hearing impairment.)

    The boss’ reply: “No. I hired you to work this shift. The shift starts at 8, and ends at 4:30. There are no exceptions. If you cannot work this shift, then you should not have taken this job. If I accommodate you, then I have to accommodate everyone else, for every dumb reason, and pretty soon, no one will be hear when I need them. If you don’t like it, then you’re free to quit. I can go out tomorrow and find 50 other people who will do this job for the shift I want. I don’t need you and your problems.”

    Go to HR? Yeah, right. Someone else in the department tried to do that, once. Needed a special (expensive) chair due to scoliosis. Boss refused to buy it. Employee went to HR and cited ADA. HR came back and told the boss he had to buy it. Boss proceeded to make it his special mission to make that employee’s life a living hell, bullying and berating and finding fault with every tiny thing she did, writing her up for taking 2 minutes too long on a bathroom break, and other ridiculous rule violations that never mattered before. Three write-ups, and she was terminated. No one knows what happened to the special chair.

    So I kept my head down and my mouth shut. I have a complex, invisible illness, and no one at my work knew, least of all my boss. I took PTO days when I needed to go to the doctor (and I got chastised and asked why I was “sick so much”) and i dragged myself in to work on days when I really should’ve stayed home. Somehow, I kept my job (maybe because I shut up and didn’t complain), though I knew I was not doing as well as I should, and when the next inevitable round of layoffs came, I got the cardboard box and the security escort out the door.

    I think about looking for a new job, but is it really any better anywhere else? Not really. At another past job, I went to HR when another boss refused my request for flextime or work at home, and the HR rep (like the doctor above) said “if it’s that hard for you to work, why don’t you just quit and apply for disability?” Yeah, like it’s so easy. And how, pray tell, was I supposed to support myself for two years, minimum, while my claim was processed? We couldn’t live on my husband’s meager security guard salary, the only job he could find after the economy cratered. And what if I was turned down because I was “not disabled enough?”

    And I am NOT that disabled. I WANT to work, and I CAN work, and I could WORK EVEN BETTER with accommodations!
    I was raised on blood, sweat, and hard work. I was not raised to sit at home and do nothing all day. To not work, in my family, is to be looked down on as “weak” and “lazy” and “spoiled.” Going on disability means my own family would most likely look down on me and accuse me of “not trying hard enough.” I’d be sneered and jeered at as one of those “lazy, worthless welfare cases, stealing money from hard-working taxpayers so they can sit on their butts all day and watch TV.”

    It’s too hard for the working chronically ill and it’s getting harder. Unless the economy returns to the boom times, when anyone who wants a job has their pick of one (or several) and employers have to scramble to find workers, it is going to get harder and harder for us to find work, much less flexible work. Because right now, to be blunt, the chronically ill are viewed as nothing but parasites who are dragging down society. No one wants us.

  3. 3 Michelle Ziemba

    She should fire her doctor; his or her behavior was completely unprofessional. There are many good doctors who will help her find solutions other than quit your job.

    As for the work situation, everyone needs to be informed about FMLA and the rights of the disabled. It would be helpful if there were easier access to attorneys who specialize in labor relation and could help those of us facing issues at work.

    I also suggest she sit down with her girlfriend and explain how that was not supportive. Everyone needs to lend an ear.

  4. 4 Rosalind

    It sounds like you will need a change if and when that happens. Maybe it will require a different strategic approach?

  5. 5 Rosalind

    Your last paragraph sums it up, doesn’t it. But is that it? Are you willing to accept that?

  6. 6 Rosalind

    Simple and clear responses. Thank you for your thoughts.

  7. 7 MD

    Looking at Michelle’s response, I guess I would want to qualify mine. What I am actually anxious about is finding a doctor who would be able to help me reasonably quickly.

    Last time the solution for me was, in fact, to keep “firing my doctors”, until I found a doctor and a physical therapist who tried a some alternative options and helped me stabilize. But it took 4 years of trying until that happened, and by the end of it I was very unwell both physically and psychologically, from the constant need to deal with discouraging and unhelpful suggestions about my job, stress, “coping” etc.

    So I get anxious because from my experience it took several years to find effective help. And I do not see a strategy that would effectively reduce the time and trial-and-error involved, given that in my experience “you must be too stressed/just change your job/just exercise more” were the constant and ubiquitous responses I got from medical professionals over time. and I had no success with explaining or trying to convince them that I am already doing everything I can in the circumstances, no matter how hard I tried to be clear and patient.

  8. 8 Julie Sacks

    I hear similar things from the young people with Parkinson’s I work with on a daily basis. I agree, it needs to be discussed and addressed and there ARE ways to prepare ahead of time for these difficult conversations with employers, colleagues and – unfortunately – even doctors. I’m writing here though to contribute some optimism. Earlier this year, a young onset Parkinson patient contacted the American Parkinson Disease Association (APDA) asking if we had an “Employer Appreciation Program.” This particular individual had received such enormous support after “coming out” at work that he felt his employer deserved some kind of recognition. Since the program launched we’ve heard from others who credit their employer with being able to maintain their job! For me, it’s been a welcome addition to what is all-too-often a disappointing conversation. You can learn more about the gentleman who helped create this program, Ken, at:–2/working-with-parkinsons/employer-appreciation-program. Maybe starting more of these kinds of programs, and rewarding companies that do it right, will help. It can’t hurt.
    – Julie Sacks, Director, APDA National Young Onset Center

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