Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

You Just Don’t Understand

Is it possible to speak the same language as another person and not be understood?  Could it be in the realm of possibility that when you share your story others look at you like you’re an alien?  For those who aren’t facing a health challenge understanding the obstacles faced by those with health issues is foreign.  It’s may be easier to describe your symptoms, but describing the impact they have on your inner life is devastating.

Hearing about someone experiencing pain, fatigue or nausea is easy to understand.  Even if you haven’t experienced these symptoms yourself, you can see the physical impact they have on the person with the illness.  You can visually see the slow movement, the lack of appetite and the angst that brings to someone’s face.  What you can’t see is embarrassment, humiliation and defeat.  These are internal experiences that impact how the person diagnosed with a chronic or life-threatening illness face on an ongoing basis.  For many it comes in waves, there are good days and bad and the trouble is you can’t schedule them to fit your schedule.  They creep up on you like a stalker forcing you to confront these challenges at times when you may be feeling the worst.

Others want to help, but what you usually get from them is sympathy which for many is translated as pity.  Pity doesn’t help!  Pity is the one message that sends those with a health challenge deeper in their shells or brings them out outraged.  Because understanding the experiences of the person with a health challenge can be difficult to comprehend, workshops have been created that utilize “empathy exercises”.  Empathy exercises recreate situations for the health person that emulate the experience of the person who is sick.  Some examples of empathy exercises are: putting popcorn in your shoes and then having you walk simulating someone with neuropathy, neurological pain; taping a couple of fingers together with Popsicle sticks and then try and cook a meal or open a jar, simulating the challenges of someone with advanced arthritis.  These are just a couple, but there are plenty of others.

These exercises have been created so that we can develop a common language to describe what it feels like to have daily obstacles as a result of illness.  They have been developed to create a sense of empathy, allowing the healthy person to walk a mile in the shoes of someone facing an illness.  Of course it won’t be exact because you can’t create an empathy exercise for the emotional and spiritual impact of an illness.  The hope is that the healthy person takes their physical experience and begins to deduce the emotional and spiritual ramifications of the limitations.  This is how we begin creating a dialogue.  Co-creating a language to communicate is helpful and validates the experience of the person facing the health challenge.

Any ideas for an empathy exercise?


I've lived my life in service to others. I'm focused on mental health and how it impacts our relationships, culture, and society. Through creative expression and narrative I believe we can impact change.

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