Every time I prick my finger to check my blood sugar, I hold my breath.  My worthiness is on the line.  Have I failed again today, or do I pass?  Every high sugar brings a wave of shame.  In fact, anything that the diabetes does to my body brings a flood of disgrace, followed immediately by a sad and scary loneliness.  When I was a kid, I emotionally ran away from these feelings –throwing myself into passionate achievements: diving, running, music, intellectual pursuits, organizations.  I loved to “run fast”, literally and figuratively.  I still do.  I’m not as fast as I used to be.  Both the wisdom and bodily decline of aging temper us all.  What chases me?   Though chased by many demons, my biggest and scariest  is shame–the shame of being overtaken by my “defect”.  Google  the key words “shame” and “illness” and you’ll find site after site of testimonials from people suffering from a variety of medical conditions speaking of their shame. Why?

Psychologists and cultural anthropologists tell us that shame is an emotion that we humans developed in order to maintain social cohesiveness and continuity.  To survive, we need cooperative behaviors within our groups, not fractures caused by disparate actions.  We need deeply embedded attunement to community rules of behavior for species survival.  Regardless of culture or ethnicity, the body’s expression of shame is universal.  Shame involves casting down of one’s eyes, a lowering of one’s head and an in-folding of shoulders. We feel hot and flushed, often with nausea and a sense of weakness or fatigue.  This powerful emotion causes the sufferer to pull within.  It acts as an invisibility cloak.  It acts to blend us into our community of fellows.  Shame squelches behaviors that are “out of line” so that we will belong to the group.  It is a drive for acceptance.  No one wants to be shunned.  To be shunned threatens survival.  Shame’s  power to keep us in line hinges upon the feeling of unworthiness that it evokes.  Shame brings  intense feelings of being flawed and unlovable.  When encased in shame I can’t remember anything good about myself    My existence feels worthless.  It has nothing to do with thoughts.  It comes not from our intellectual centers (our neocortex), but from our deeper emotional self (the limbic system).  Importantly, it is not related to self-esteem–a purely cognitive concept.  It is not guilt–a negative feeling attached to a specific action having nothing to do with our intrinsic worth.  It is programmed early in life and as dark and uncomfortable as it is, shame becomes human “glue”.

What in the world does this adaptation have to do with carrying a chronic medical problem?  (I refuse to say “chronic illness”.  What is illness but a perceived state of being?)  People who suffer from chronic medical conditions often incorporate their body’s “defect” into their sense of identity.  As a result the abnormal body function becomes globalized into “abnormal person”.  Believing myself to be outside the norm (“abnormal”) brings shame.  This is particularly true for children–whose core identities haven’t fully formed before diagnosis.  (Asthma, Type 1 diabetes are two prime examples.)    In point of fact, a chronic condition does indeed make one “different” from those who don’t suffer from it,  but it doesn’t revoke our membership in the human race.  Unfortunately, if the body defect is woven into the fabric of our core identity it becomes bigger than reality and the solace we gain from basic human connection can be lost.  In other words, we ourselves revoke our membership in the human race.  When this happens we feel on the outside in every respect–and the desire to belong is intense.  Our body has betrayed social connectedness by being “abnormal” and shame can run rampant.  Our very being feels “wrong”.  This phenomenon happens not only on individual levels between people (friends, family) but also societal levels (public perceptions, discriminatory biases).  I remember being so ashamed of who and what I was that the only thing I could try to do was to “pass”–to make myself and others believe that I was “normal”.  Hence the over achievement; the “running fast”.  It wasn’t the diabetes I was ashamed of, it was myself.  The solution is not to push harder and faster to “pass”, but to see the shame as misplaced.  I can be a member of the human race even with diabetes.  In order to believe this I must take a long look at my core identity and put the diabetes in a more boring perspective.  Certainly my life trajectory has been greatly influenced by having Type 1 diabetes but it is more like an uninvited house guest–not a crucial piece of who I am.

Brene Brown is a noted psychologist who is a pioneer in the study of the effects of shame in our lives–both individually and in relationship.  She tells us that shame is a dark secret, never to be talked about.  It is such an uncomfortable feeling, so attached to self-loathing, that we are driven to try to escape it.  According to Brown, people try, to varying degrees, three main paths of escape:

• Move toward the shame; embrace it; apologize for your existence, demean yourself; in other words agree with the feeling
• Move away from the shame: avoid people and situations that bring the shameful feelings; hide from life and no one will see how unworthy we are
• Move against the shame: Push with anger, by shaming others when you feel ashamed

None of these strategies work.  Shame still resides inside, secret, unspoken and able to do its dirty work.  Brown has shown that only through “naming the  demon”, by staying with the feeling and talking about it will shame lose its power.  We need an empathetic listener to share our feelings out loud; by calling out the shame in an empathetic setting it ceases to flow.  Empathy trumps shame.  It can be empathy from a trusted family member, a dear friend, a counselor or clergy person.  It can even be empathy from one’s self through journaling, imagery or even muttering to yourself in the mirror.  I remember a turning point in my own life when, after finding a high blood sugar of 300+ for no apparent reason, I looked  into my own eyes in the mirror above the sink and spontaneously blurted, “It’s okay.  You’re doing the best you can!”

As I ponder all these issue, a question keeps popping up:  Is shame an adaptation that has outlived its usefulness?  It makes me reflect on the evolution of human consciousness–a lofty and conflicted topic.  I like to think that a higher consciousness gives us the ability to see others, to empathize, to act altruistically.  It opens us to see differences as enriching our lives, not threatening our existence.  Shame pulls us into extremes of self-consciousness.  It pulls us to do anything to be accepted by our fellows, including swallowing ourselves and shunning those who are different.  It puts blinders on our ability to see more broadly.  This may have been necessary for preservation in early primate and human tribalism, but it is a detriment to our harmonious survival now.