Protecting Yourself

When I heard my diagnosis of multiple sclerosis at twenty-five, my father, a physician also living with MS, was quick to react.  “Don’t tell anyone,” he advised.  “News is a competitive business. It will be used against you.”  I wanted to believe otherwise, that people would react benevolently.  My teacher/rabbi at Columbia, Fred Friendly,  instructed otherwise. “You have to tell the truth.”

My Old Man was right on that one.

NBC News had been courting me, promising a job after graduate school.  When I told the truth to the executive  reaching out to me, I watched the light in his eyes go out.  I learned a hard lesson.  When I negotiated with CBS News to join the Cronkite broadcast, my lips were sealed  I lied on the medical forms, faked my way through the company physical, which a cadaver could pull off, and even managed to test my good eye twice.

On reflection, I thought, how sad to be going to work with the most trusted man in America on a lie, in a news organization standing for truth and openness. My friend Robert McNeil of PBS told me, “It’s an honorable dishonesty.”  I am sure he was just lending support.  That sounded an awful lot like Nixon to me.

Anyone struggling with a chronic condition, especially one invisible to others, faces that vexing question.  What do we tell prospective employers, what do we owe them at the same time protecting ourselves.  There is no easy answer.  My thinking over the years certainly has evolved.  I finally have my feet planted  in the real world.

We are seen as damaged goods by most others.  We provoke difficult questions about insurance coverage, doubts about our productivity.  These are especially true in a bad economy.  When a possible boss draws a caricature and sees Tiny Tim pleading for work, the odds are not good.

We may know that we would work twice as long and hard to prove our value as the chronically healthy, but we are not making the decision.  I say, if your disability or illness is invisible to others, keep your mouth riveted shut.  Under  the Americans with Disabilities Act, we are under no obligation to volunteer health information to anyone.  Do not count on benevolence.  If you use a cane, walker or wheelchair, obviously your options are limited.  You will have to sell yourselves, knowing you probably will not hear an honest answer.

I waited a full year to finally tell the whole truth to CBS News.  I went to great lengths to hide my limitations and held my breath a lot.  When finally I told them I had MS, it really was too late for them to act.  I had done good work and proved myself.  Whatever was said behind closed doors, they left well enough alone.  They told me they trusted my judgment and the ball would stay in my court.

Years later, after both of us had left CBS, Cronkite’s longtime executive producer bought a few drinks, and we gossiped about the news business.  Suddenly and devoid of context, he sat up and said, “You did the right thing.  If you had told me you were sick, I probably would not have hired you.”

 

 

 

 

23 Responses to Protecting Yourself

  1. Jim February 16, 2014 at 12:07 pm #

    Richard, I have been, what feels like, covertly spying on your blog for many months waiting in intense desire to hear the ultimate life changing news, on the future of stem cell procedures that would be the ticket to physical and, for that matter, mental normality.
    Having said that, this blog has enticed to come out of my closet and, , wholeheartedly agree, in some special cases, with the use of deception. To make a long storey short I and my family are benefiting from my LTD income from employment that would not have been with total transparency.
    Carry on my compadre Break a leg!

  2. Jim February 16, 2014 at 12:19 pm #

    After reading my previous befuddling reply it only goes to show that I’m in need of a cure Stat! (sorry)

    • Richard M. Cohen February 16, 2014 at 12:25 pm #

      Not a happy, though necessary, way to live. Sooner or later, we all join the real world.

      Best,
      R.

  3. MB February 16, 2014 at 5:05 pm #

    I accepted my new position in the company two weeks prior to my MS diagnosis. The attack which precipitated the diagnosis came as a surprise (no signs before) and was very public (started limping, slurring speech at work, and couldn’t write).

    I recovered fully, started the new job, and worked like a dog to prove I could handle the promotion. I didn’t miss one day of work for four years, received another promotion, and basically overworked myself until the next attack.

    Then the disease became visible as I transitioned to using a cane. I emailed everyone in the organization with the subject line reading, “Cane But Still Able,” but things started to change. I started receiving the sad-puppy-dog-eye looks.

    That was the game changer. I agree wholeheartedly with your recommendation to not disclose your illness until it’s unavoidable. America, the land that values all things beautiful, is not very accepting of people who are faced with challenges. Having above average intellect is not as cool as having an above average bra size.

    I asked my boss who has since retired, if he would have offered me the job if my diagnosis was known earlier. He said he would not have, but added that would have been a big mistake. Regardless of his hindsight being 20-20, the fact remains that I would not have gotten the job.

    The more sobering realization I made after that exchange with my boss was if the roles were reversed and I was the healthy one, would I have made the same decision not to hire damaged goods?

    • Kate Aquilino February 16, 2014 at 7:56 pm #

      One of my friends, who considers herself Eeyore, calls me Tigger. I always try to see the bright side.

      I can’t lie. No good at it. Shows all over my face. My mind goes to the lie as my tongue to a sore tooth.

      I lived with MS for more than 20 years before a doc told me what I already knew by then. That delay was providential. I lived my life getting to know it before I knew its name.

      I’d come to the interview ready to show I was a capable, flexible, honest, charming person. Not a comedy bit exactly but lighthearted. Everyone has problems. Not one of us makes it out of this alive. People get transferred, get cancer, get hit by a bus. Life goes on. We can’t control what comes our way just how we handle the challenge. Make an impression!

    • Richard February 16, 2014 at 9:47 pm #

      Probably so, as would I. How sensibilities change. We are better people for our journeys. I have no regrets.

      Best,
      R.

  4. Mark February 16, 2014 at 9:29 pm #

    Good advice. I work for a Fortune 300 and spent thousands of dollars retaining an employment attorney for guidance in this area. He gave me the same counsel. Next time I have a question relating to MS, I’ll read your blog before spending a dime and buy you dinner!

    • Richard February 16, 2014 at 9:48 pm #

      I’ll do it for hald the price. We learn the hard way.

      Best,
      R.

  5. Laurie February 17, 2014 at 3:38 am #

    Damaged goods- sums it up. Then you feel like it is true. Is it? How can we make illness more sexy…

    • Richard February 17, 2014 at 9:49 am #

      You are not damaged goods, though I agree the world can make you feel like it. It is their flaw, not yours. But it is your problem. All of us have to keep proving ourselves. Sad but true.

      R.

  6. Kyle February 17, 2014 at 10:43 am #

    Like MS itself, this issue is rife with uncertainty. I seem to have chosen a path contrary to the the prevailing wisdom.

    When I was diagnosed I had been at my job for about 6 years. I’m still there, 2 1/2 years later. The relapse that lead to my diagnosis required many trips to blood lettings, MRIs, doctor’s visits etc. I was coming in late and leaving early often. I did not want my bosses to think I was interviewing. So I told them.

    Maybe it’s because I work for a small company, maybe it’s that I have good bosses, maybe it is karmic balancing because I have MS, but whatever the reason my MS has never been an issues at work. Everyone knows and no one cares 🙂

    Kyle

    • Richard February 18, 2014 at 7:27 am #

      Kyle-

      My best to you, but realize you had a job and were in place when the diagnosis came. There was a comfort level with your colleagues. Big difference between not firing and not hiring. Sounds as if you are in a secure spot.

      Best,
      R.

      • Kyle February 20, 2014 at 8:15 am #

        Richard,

        I know that from diagnostic journey, to level of disability, to work environment, to current care providers I am as luck as anyone with MS can be 🙂

        I am thankful every day!

        Kyle

  7. Kate Aquilino February 17, 2014 at 2:35 pm #

    Kyle, Don’t for a minute think they don’t care. You are a fortunate man. I was fortunate as well. I think the small company is key. Tigger

    • Kyle February 20, 2014 at 8:17 am #

      Hi Kate,

      By “no one cares” I don’t mean they are unconcerned for my well being, but rather they accept it and we move on 🙂

      Kyle

  8. Geof February 18, 2014 at 8:20 am #

    Working for the government, I’ve been fortunate enough to be in a job where they can’t let me go because of my MS. I chose to live out loud at work and elsewhere. I can’t live a hidden life. It’s not in my nature. Eight years after my first flare, I still have people find out I have MS and do a double take.

    “What? You have MS? I never knew or even guessed.”

    I figure the longer and better I can work, the less people will feel like I and others with MS or other maladies are “damaged goods.” (I admit their are times I don’t want to feel the standard carrier, but I don’t want my kids to think their ailments will hold them back either, and theirs are greater than mine.) Surprisingly to me, I even qualify for schedule A hiring. I have no idea if it helps or hurts though since I rarely apply for other jobs. If I got another job, I’d have to do it. Then the odds are against me liking it as much as I like my current job. I am lucky in the extreme in this respect. For the time being I function well enough to keep learning which is why I love the job.

    • Richard February 18, 2014 at 8:14 pm #

      You are lucky. The gov’t cannot touch you.

  9. Cindy February 18, 2014 at 11:48 am #

    Thanks Richard, always wise and knowing. I am unemployed after having been laid off last year. Now struggling not just to find another IT job, but to even get through the interview. The MonSter has really affected my cognitive abilities, and I fear the longer I am unemployed, the harder it is to remember how to do things.

    A lot of employers are now requiring degrees (I have none), and certifications (none of those either). I was doing IT support long before anyone thought of “certifications”. I would like to get them now, but unfortunately like the interviews, testing requires memory, a good one, which I don’t really have now.

    Even so, I would never tell a prospective employer I had MS at least until FMLA kicks in. It’s none of their business as long as I can perform the essential function of the job. It does however make me really sad to not be honest.

    • Richard February 18, 2014 at 8:16 pm #

      God, what a struggle.

      R.

  10. Lori February 19, 2014 at 2:48 pm #

    Richard – I watched you and Meredith on Dr. Oz and am fascinated and hopeful for stem cells to be the cure! I have been reading your posts…and am wondering – when is the next stage of your treatment scheduled?
    I have just recently had an MRI to check for MS – no lesions were found…but it was non-contrast…and now am questioning the results. My Dr. tried to reassure me saying that contrast is only necessary to show new lesions…so I should be happy – I see a neurologist in April – hoping he will be able to reassure.
    You are an inspiration…keep on blogging!

    • Richard M. Cohen February 20, 2014 at 11:46 am #

      And you keep on going. Long road, but we will get there.

      Next phase is soon, but not sure when.

      Best,
      R.

  11. Janet February 19, 2014 at 4:07 pm #

    i had been employed for almost 18 months when i had an exacerbation hit. and hit me hard. slurred speech, shoulder out of alignment, and dizziness. i was off of work for 2 weeks (tried to rush my recovery) and back at work. applied for a promotion (change of position) did not get it. over heard the person in charge of the position “we don’t want her (said my name!) cause she is sick.” grrr…

    didn’t really matter, as i had a second attack with in a few months and was then dx’ed with cancer.

    small company, but also small minds..

    • Richard M. Cohen February 20, 2014 at 11:48 am #

      Please, never fool yourself and take anything for granted. We fight an illness and the reaction of people in our lives.

      Keep going.

      R.