Invisible

Netflix decided that a documentary called "Unrest" is a good match to my viewing interest.  One evening, I decided to give it a watch.  

The main plot was about a seemingly healthy young lady, Jennifer, suddenly fell seriously sick.  She saw doctor after doctor who ran test after test.  All the test results came back normal while she was certain that something was seriously wrong with her.  It turned out she had what is called "Chronic Fatigue Syndrome".  A bubbly, active PhD candidate slipped into a bedridden life for years.  

Little is known about the illness although millions of people suffer from it.  Many of them are seriously disabled and have vanished from the public eye.  Because the cause is unknown, and the symptoms and severity vary greatly from person to person, there is currently no cure or treatment for CFS.  Many people, including medical professionals, still think this is just an imaginary disease that hypochondriacs make up in their heads.  

Jennifer started filming herself early on despite her difficulties in moving or holding herself up.  "Someone needs to see this", she said.  Thanks to her perseverance, there is a lot of footage throughout her journey to make up this moving documentary.

Being incapacitated, Jennifer spent many, many days lying in bed inside a dark, quiet room by herself.  At one point, Jennifer was weeping in bed, "It was like I had died, but was forced to watch as the world moved on."  

Her every word hits home for me because, although I do not have CFS, I also have been suffering from long term health problems that are not visible from the outside.  For decades, doctors and even my family were dismissive of my assertions about pains and discomfort.  "You are too young to have so many aches and pains," they said.  They thought I was either neurotic or hypochondriac.  

One physical therapist said to me during the intake session, "Since your family doctor sent you, for professional courtesy, I will see you a couple times and then discharge you.  You are the youngest and the healthiest in the entire waiting room.  You are fully functional.  Please don't waste my time."  As he examined me in preparation for the discharge, however, he had a big surprise.  I ended up being his patient for over two years before he recommended that I go see a specialist.

A medical researcher interviewed for the documentary had an encounter with a CFS patient who went to her for a diagnosis.  After running a lot of tests, the researcher told the patient that she had major problems with her immunological system.  The patient cried.  At the time, the researcher thought she must have been too insensitive to blurt out something like that to the face of a patient.  Little did she expect that those were actually tears of joy!  To the patient, finally, someone had found evidence that something was wrong with her body.  She felt understood and vindicated.

That was exactly how I felt the day my neurologist handed me the diagnosis.  For over forty years, I got scolded at for the way I walked, my complaints about headaches, and various body aches and pains.  Yeah, I felt vindicated, too.

In one scene, Jennifer and her husband were supposed to host a party for family and friends, but Jennifer's condition suddenly took a hard turn in the afternoon.  She became so sick that she had to retreat to her bed in a dark, quiet bedroom.  Jennifer's husband, Omar, went on with the party.  He shared his feeling afterwards.  

"There are moments I see us through other people's eyes and somehow it's much sadder than when I am just living our life together.  This is normal for us.  . . .  And it is only when other people observe how not normal it is that I am forced to recalibrate and sit with how hard this is.  You know what it is like being observed?  It's that people feel sorry for me.  . . .  It hits a nerve."  The loving husband started crying.

As a pain patient, all these years, I try to live as normally as possible.  I already learnt that talking about it is useless.  Most people do not believe I had so much pain.  Even if they believe me, they don't understand.  And even if they understand, there is nothing they can really do for me.  Dwelling on it only makes it harder for me to go on with my life.  I only want to live.  The way I have learnt to survive is to just keep moving.  Omar's monologue reverberated in my heart.

My friend, Bella, and my sister-in-law, Lori, are also long term pain sufferers.  We may look okay on the outside, but we endure pain all day long and there are movements that we simply cannot do.  It is a disability that is invisible to most people.  We try hard to live a normal life and catch up with others everyday.  If life tells us we cannot do A anymore, we move on to do B.  When B expires, we try to find C.  We keep moving on rather than giving up.  

We do not need or want pity.  We only hope that you understand and accept us the way we are.  We are slow and we have our limits, but we are trying.  Everybody has their challenges.  Some people suffer from even more debilitating issues and they are doing their best every day.  All we ask is that you spare us a little patience and compassion.