“You Are Putting on a Good Show”

I have learned from my patients over the years that one of the hardest things to hear when trying to cope with a neurological condition is, “But, you look so good!”  This comment is usually made by a loved one but might also come from a casual acquaintance, coworker or employer.  It can mean a variety of things.  It is my sense that most of the time, it is meant as a statement of support.  The message is, “Despite your condition, you look well.”  However, in a substantial minority of cases the message is, “You look fine.  Why can’t you take care of your share of XYZ at home or work?  Are you faking it?”  This negative message is more likely to come from a coworker or employer, but does sometimes come from friends and family members.  Regardless of the intent of the statement, I would argue that it is almost always an unwelcome comment to the person who is living with a neurological condition.

Some neurological disorders do cause obvious outward signs that alert people to the struggle that patients face.  Patients may display weakness or tremor or abnormal gait pattern.  Their facial expressions may betray the pain they are feeling.  They may use an assistive device such as a cane, walker, or wheelchair.  However, many patients have even more impairment than is evident, and some conditions have no signs at all.  Patients with neuropathy experience tingling, burning, and electrical sensations that no one can see, or they may be plagued by numbness that keeps them from sleeping at night.  It may be surprising to hear that numbness can be as unpleasant as pain.  A patient with a mild stroke may have recovered beautifully to my eyes but still feel severe fatigue.  They may have a visual field defect that keeps them from driving.  An MS patient may not need a walker or a cane but experience bowel and bladder incontinence and severe cognitive impairment.  Patients with Parkinson’s disease often know that they should exercise every day but, plagued with apathy, never do.  Patients with mild traumatic brain injuries (commonly known as concussion) appear completely normal to the casual eye but have dizziness, light sensitivity, irritability, insomnia, and trouble thinking.  Almost all patients whom I see with tremor feel even more tremor inside than is evident outside.  You may be able to see in the eyes of migraine patients that they are in pain, but what doesn’t show is the dizziness, fogginess, nausea, light, smell and sound sensitivity and visual blurring.  The comment “But, you look so good” communicates, “I am not acknowledging what I cannot see.”

“But, you look so good” also fails to recognize the struggle that occurs in the privacy of one’s home.  I have always had an inkling that a lot happens at my patients’ homes that I do not see.  I finally understood the depths of what goes on when this drama played out in my own home in the weeks and months prior to my back and neck surgeries, and in the weeks following my back surgery.  Copious tears were shed.  When the time neared for me to return to work, I sobbed, wondering aloud how I would ever manage.  My movement was restricted.  I figured out how to plug and unplug the iron with my toes because I could not bend down.  I learned to brush my teeth without bending forward.  Members of my family had to put on my shoes and socks for me.  The challenges I faced were largely invisible to the outside world, but they were no less deeply felt.

I have come to tell patients whom I know are suffering but are trying hard to push through and put on what I consider a brave front, “You are putting on a good show.”  I believe this phrase acknowledges their struggle and recognizes their accomplishment at living with their condition.  It uplifts rather than diminishes their successes, no matter how small.  The hidden meanings are not pejorative.  “You are putting on a good show” says, “I am proud of you.  I believe you, and I believe in you.”  Another version of the phrase I use with some patients is, “You are faking it good.”  This means “I know you don’t feel well, but you are doing a good job doing the best you can.”  People with neurological conditions (and all health conditions) should not be demeaned by thoughtless (or worse) comments but rather offered our unconditional support and encouragement along the way.