Owning Disease Shame – One Story


I began this post several times, always with a goal of seeking your understanding.  Feelings as words fall flat, so I will simply relay the story of when I started to sense that I was responsible for a disease diagnosis and could somehow control it, and will end with a recent encounter supporting that illusion.

I managed rheumatoid arthritis along with working full-time due to an open-minded and kindly opportunistic Residency Program Director, the only person at work I revealed a rheumatoid arthritis diagnosis to, at first.  During those first two years of RA, I excelled by working from home when I flared, sometimes as often as a couple of days a week during winter.  I spoke at national conferences, was elected to the board of a professional organization, and enjoyed the respect of my peers.  While I needed more rest, and at times the evening commute tortured my hands, I studied during off time and became one of the first in my field to earn a certification.  Biannual 360-degree reviews resulted in praise, pay increases, and even a bonus for the certification.  It would be remiss of me not to mention my diligent Chief Residents who made life easier, most of the time.  As challenging as it was, I had RA handled.

Then a new Program Director came on the scene, a new boss with a multitude of “better” ideas.  Within a month The Idea Guy notified Human Resources that I was ill.  He also sought big immediate changes during recruitment season, the busiest time of the year for competing medical residencies.  For 10 years I worked overtime during recruitment.  My new boss needed me on site  by 7:30a until at least 5p, yet I often stayed past 6p.  The RA flared and I started to limp and type painfully when I finally submitted a reasonable accommodation request under the Americans with Disabilities Act.  I mistakenly thought my past success validated my ability to perform; it was logical from my perch.  After my Rheumatologist’s recommendation and 2 months of diving into my medical records Human Resources determined that being on site was a job requirement, no work from home would be allowed forthwith.  All Residency Coordinators received new job descriptions requiring our signatures.  Within 8 weeks of the new Program Director’s arrival I was feverish with swollen joints and deep body aches I hadn’t felt before.  I tried harder as my new boss became more and more unhappy with my primary focus on recruitment.  He sought my apt attention for a minimum of 2 hours per day as he spoke and my task list grew.  Hiding my pain and frustration became impossible.  My Rheumatologist completed FMLA paperwork for intermittent leave and I asked if I could work at home on those days I could not make it in to the office for a full day.  Human Resources denied my request and began asking for re-certification of the FMLA paperwork every 30 days in spite of the physician’s certification that my disease was permanent.  It is allowable under the law and cost me $25 every month.

All of this happened between August 1 and December 10, the date I was diagnosed with Fibromyalgia.  I unabashedly wailed, “I CAN’T BE DISABLED!”.  Those few moments are indelibly etched on my heart and mind, both my hopelessness and the doctor’s compassion are a part of me now.  This was where my tenacity had landed me, with a prescription for an 11-week rehabilitation program and another for just a few Xanax to get me past the truth.  The story continues with a few months of me righteously (and pathetically) sacrificing my health trying to regain what I had lost.

You may think I am being vengeful 5 years later when I finally got up the gumption to reveal their behavior, but that’s not it.  For  purely selfish reasons and storage space I forgave a while back, but those days left behind a slime of shame that is reinforced with big and small hurts regularly.  The way to rid myself of shame is to own it, so here it is.  I cannot fully control Rheumatoid Arthritis or Fibromyaglia no matter how hard I try.

Waiting in the dentist’s chair last week I heard a conversation across the hall, the two women’s loud voices as clear as if they were in the room with me.  They began with a tirade against welfare, “except for those who really need it, of course”.  Then I heard, “But you know where they could really save some money?  If they actually looked deeper into these people collecting disability benefits.  At least half of them are faking and just sitting on their butts while we foot the bill.”  The other woman responded, “Yeah, I know.  They’re just lazy and don’t want to work.  I started working at 16…”.  I tuned out at that point.

 

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