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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5 Things Rheumatoid Disease Patients Wish You Knew

  1. A Rheumatoid Disease diagnosis leads to a double life. Thanks to new treatments, many of us have hours every day when we appear to participate in life just as you do.  There are also private hours spent soaking in Epsom salt baths, taking pain medications, going to doctor’s appointments and physical therapy, meditating, exercising, journaling, supporting one another online, wearing compression gloves and socks, applying cold and hot packs, applying menthol creams and patches, dipping our hands in hot paraffin, napping, taking hot showers, and wearing splints and braces, all to possibly have a few precious hours of normal, or as close to it as we can get.  Sometimes it works, and sometimes the disease rules our day and all we can do is rest and take comfort measures.  This aspect makes traditional employment challenging for Rheumatoid Disease patients, 60% of which are disabled within 10 years of diagnosis.
  1. Different than Osteo-Arthritis, Rheumatoid Disease is an auto-immune disorder that affects people of all ages, even children. Rheumatoid patients around the world advocate for “Rheumatoid Disease” to replace the term “Rheumatoid Arthritis” due to wide-spread misunderstanding.  Rheumatoid disease produces destructive molecules called fibroblasts that attack the protective lining around joints causing inflamed and shredded tendons, cartilage loss, and finally bone erosion.  That is the part you may be familiar with, but Rheumatoid Disease also causes:
    1. Costochondritis (painful swelling in the ribs)
    2. Uveitis (painful eye swelling, may cause vision loss)
    3. Pleurisy or interstitial lung disease
    4. Cervical subluxation and myelopathy (compression of the spinal cord)
    5. Kidney disease
    6. Atherosclerosis (heart disease), the leading cause of death in RD patients.

Educating health professionals about rheumatoid disease manifestations would facilitate early treatment of co-morbidities and delay disability.

  1. Even when symptoms appear controlled, Rheumatoid Disease marches on and adapts to treatment.  RD insidiously erodes cartilage and bone while patients feel perfectly fine, especially during the first 5 years.  Recent MRI studies confirm that even in clinical remission, there is inflammation around the joints, indicating a need for life-long treatment. The first RD medication I took stopped working after 4 years.  Currently, my rheumatoid antibodies are eleven times the norm after 3 years on an expensive biologic injectable.  Our super-immunity develops work-arounds to the medicine.  In the near future I will need to add a low-dose chemotherapy drug to suppress my immune response.  We will have to try other medications that may or may not slow the disease as my immune system keeps adjusting.  There are many RD Warriors who haven’t found a medication that works well enough, or who have run out of options.  One friend of mine injects herself every week for a 20% improvement in Lupus and RD symptoms.
  1. Rheumatoid Arthritis drug commercials exaggerate ability benefits and list a litany of risky side effects in a low monotone.  Actors appear in full remission without Prednisone moon-faces, but more than half of patients never achieve clinical remission for even a short period, and most medications help to a degree if at all.  Don’t get me wrong – I LOVE Enbrel because I can walk, fevers are less frequent, my pain is manageable, and I have little to no bone erosion.  While this miracle drug makes my life worth living, it doesn’t make running on a sandy beach or toting around a toddler on my hip possible.  More importantly, the medication doesn’t make working full-time possible because the disease is still active and unpredictable.  What it does make possible are life-threatening infections, which is why patients whose symptoms are fairly controlled often choose to risk joint erosion.  The risk-benefit ratio is tough to navigate, especially with the booming vitamin/supplement industry promising their own brand of remission.  Just like wrinkle cream promises, none are entirely accurate.
  1. We need you to help us spread the word. Rheumatoid Arthritis is one of the 6 most debilitating diseases in the world, yet the number of rheumatology research projects funded by the National Institutes of Health dropped by 52% from 2010 to 2014, while the number funded by private foundations fell by 29% over that period, according to data published by the Rheumatology Research Foundation (RRF).  A cure is on the horizon with new immuno-therapy breakthroughs, but funding is moving in the wrong direction.

Taking Control of Pain Relief

Pain is a nag in the 5th decade and unless I receive a whole body transplant, it is likely a forever friend, crashing parties and obnoxiously showing up when I have planned fun.  Although I accept this reality, I do not have to live gritting my teeth and snapping at anyone who comes close.  There are pills and shots and booze and marijuana, all sorts of justified remedies when pain is “killing me”, yet none of those promote productivity or participation, both of which are necessary to keep me out of the abyss.  Managing chronic pain is individual, as unique as you are, but Doctors do not have time to figure out your equation.  That is up to you.

The D.E.A. brought the War on Drugs to chronic pain patients, physicians, and pharmacists in 2014 with its Diversion Control Program governing opioid medication prescriptions.  They also reclassified previously non-scheduled pain killers, such as Tramadol, based on reports of abuse.     In Illinois lawmakers approved a pilot program for pharmacies to voluntarily put combination locking devices on opioid prescriptions .  I can well imagine my stiffly swollen fingers trying to manage a tiny combination lock on a pill bottle, but it does not faze me because I own a hammer.

In 5th decade mature style, pills sit beside right thinking and guided meditations in my pain control toolbox.  I cannot think or say my pain is “killing me” when I have witnessed trauma in a busy Emergency Department.  I’m good compared to dying and being dramatic is tiresome and without benefit.  That is not to say I do not whine, just that I do so only to my Mom or in my journal and by being honest with myself the pain does not overwhelm me.

Guided meditations, whether for wellness, pain relief, or relaxation and comfort put me in touch with my body and help me release tension which amps up pain and makes me unlikable.  This practice makes me responsible for contributing to a solution and keeps me from feeling totally out of control.  If you suffer from pain, (and who doesn’t?), try changing the conversation in your head to one of support and take at least 10 minutes a day for meditative practice.  It will change your experience, I promise.

Chronic Pain Management Guided Meditation