Ageism and Myasthenia Gravis

[Deleted User]

I’m 65 years old.  Ageism has not been a concern with my health providers; they have all been excellent.  Collaborative, upbeat and well informed about MG.

In the workplace my experience was different.  I was in a global position in a large company.  After the onset of MG, I experienced issues in crowded meeting rooms that were warm and humid.  Eyelid droop, head droop, speech difficulties, etc.  I had not yet been diagnosed, was struggling to figure out what was happening and did not realize that it was apparent to other people.

My boss assumed he was seeing old-man issues.  He didn’t mention that my peers and our VP were commenting on this stuff until several months after the comments began.  I also learned that it had become an ongoing game for people to instant-message each other in meetings, guessing how long before I nodded off.  Note that I never actually nodded off.  I typically only need a few hours of sleep each night and never, ever nap during the day.

In my team, I was the most tenured and had a high-performing reputation.  Yet, no one asked me why they were now seeing these things, even though they had known me for years as an energetic team member,  They assumed it was an age thing.

When I learned about this, which was just after I was diagnosed, I felt embarrassed and was concerned about my job security in an environment where performance is everything.  I explained the MG situation to all my peers and to participants in meetings that I hosted.  It was humiliating.  I spoke directly to my VP, whose response was, “I don’t pay you to sleep in my meetings.”

I eventually got permission to work remotely because I could no longer tolerate warm meeting rooms.  Working remotely is common in that company, but there was always an undertone that I was a lesser performer because I was located nearby, yet unable to work face-to-face.  But I maintained the same performance level and aggressively sought new projects.

Then came COVID.  The company did lay-offs and, in my 23rd year with the company, having worked on hundreds of projects, I was given 3 days notice that I was being terminated.  I was the only termination on our team, was also the oldest, and the only one with a health-related disability.

I turned 65 just 6 weeks after I was terminated.  I wasn’t ready to stop working and my retirement financial plan was based on working at least a few more years.  Everyone knows that getting a new job at 65 is very difficult in a good economy and impossible in a COVID economy.  Surely they knew that this action would force me into a premature retirement.  Overnight, I went from a high-paying compensation plan to living on Social Security and savings.  It was like unexpectedly driving off a cliff.

Were age and MG the reason for the termination?  I will never know, but it certainly feels that way.

 

[Deleted User]

I accidentally posted an
Incomplete entry about AGEISM.
I’m 72+ years old. Feeling older and more tired on a daily basis has become a part of my life.
gMG has many different directions it can take my life in.
I’m AGING as any person would with a Rare Disease such as gMG. The sleep I grab during most afternoons gives me an extra few hours of feeling stronger most days.
I take MESTINON 3x daily, GABEPENTIN 3x daily and 50mg of Serequel 1x daily.
Does my AGEISM ease or slow down, NO.
The medical cocktail and the walking relieves the AGING symptoms.
I appreciate your postings, it would be an active forum

[Jonathan A]

I have Myasthenia Gravis  …. but except for the Month of November 2020  (septic infection from a toasted immune system  from too many immune supressant medications) …. I have been in remission  for over a year now  ….  and most of my symptoms have faded away  … KNOCK ON WOOD.                          My problem was with my care provider health plan.    It took 8 months from July 25, 2019 to March 24, 2020 to get a diagnosis for my MG and be treated.   I was finally diagnosed by a floor nurse at St. Joseph’s Hospital,  as she recognized I had all the MG symptoms in many of her other diagnosed ward patients.      My health care providers were TOTALLY CLUELESS.   They looked at my patient forms and saw….OH HE IS 68,  even though I look much younger  … no wrinkles and still my full head of dark brown hair  … same color  … no gray … not receding.   They ignored all the 8 or 9 MG symptoms that I described  … and how they were WORSE in afternoons unless I rested.     So instead   ….. I was tested as if I were elderly.   One new referral doctor … actually asked me if I DYED MY HAIR.    NO NO NO !!! only two of my younger Irish side brothers have their blonde hair specked with gray  … my other Italian dark hair younger brothers have no gray hair.   INSTEAD OF LISTENING TO MY SYMPTOMS they tested my for OLD PEOPLE DISEASES  …. assuming I had  diabetes, high blood pressure, gout, cancer, blood in my piss and poop, prostate cancer, GERD, Acid Reflux, and heart chest pains.   I was referred to a heart specialist, and had to undergo three very invasive heart tests  …. including a CARDIAC CATHETERIZATION  … where they cut into me and pushed a camera up an artery in my crotch  … after they shaved me.     I passed the heart tests fine  ….  but they were clueless to what all my symptoms were … and sent me back to CIGNA for them to try again to diagnose me.   But CIGNA was still trying to prove I had Diabetes  … so referred me to a foot doctor and an eye doctor to prove to themselves I must have Diabetes.         The HEART SPECIALIST wrote I was a “POOR HISTORIAN”  … as he could not understand that all my 8 or 9 symptoms could be just one disease of MYASTHENIA GRAVIS.  That doctor’s comment on his report soon spread to other documents that I later found on Banner portals that other doctors repeated.   After 6 months I went to a Banner hospital urgent care and was hospitalized for 4 months  …. as it took them the first 2 months   … for a floor nurse  (AND NOT A DOCTOR) to recognize my MYASTHENIA GRAVIS.              SO BE DIRECT and go elsewhere when you are being age discriminated   … and hopefully you will also find an intelligent and compassionate nurse WHO WILL LISTEN  … and not prejudge you.