Fighting Stigma

Stigma: Noun

Simple Definition: a set of negative and often unfair beliefs that a society or group of people have about something

b) A mark of shame or discredit

c) An identifying mark of characteristic; specifically: a diagnostic sign of a disease

Stigma is a monster with many tentacles.  It is shaming at its worst.  It affects more people than you or I could ever know.   I find it peculiar that with all of the awareness today that it is still so prevalent.  Take something as simple as our lexicon of speech.  One day I read a tweet that commented that the weather was bipolar; recently I watched a movie where a young child was labeled as bipolar for something as “normal” as being friends one day but not the next.  I would hope the writers were ignorant of perpetuating stigma as opposed to showing a callous disregard for those affected by mental health issues.

Those of us who have neurological conditions or any condition that falls into the realm of mental health find we are systematically trivialized, mocked and dehumanized. 

The trend of using a medical diagnosis as an insult is incredibly belittling to those that actually suffer from said diagnosis.  I don’t understand why people think its ok to call someone OCD because they like things a certain way or bipolar because they change their mind or schitzo because you don’t like their behaviour.   How offensive would it be if we used cancer or diabetes the same way?

Many of the people who live on the margins of society have mental health issues; they are vulnerable to exploitation, violence, addiction.  They are treated as pariahs inducing society to view them with disgust and fear.  This fosters a derogatory self-worth cycle that may ultimately destroy them.

Is it any wonder that many of us hide our struggles, disown our reality and live in fear of discovery and judgement by a society that has such rigid parameters?

Advocates encourage awareness, hoping it will bring compassion and erase the stigma that follows us.  It is often said others can’t truly love you until you love yourself.  Stigma makes loving yourself so much more difficult.  Being told daily who you are does not fit in with societies expectations or is not good enough is damaging, but I can see a shift happening.  We are starting to recognize all that makes us different is not necessarily worse.  We are starting to celebrate the positives and find ways to negate some of the “negatives”.

I believe it is the accumulative voices we raise advocating for ourselves, our friends and family that will demand respect of us individually and as a whole. 

When we value our contribution to this world and cherish ourselves in our entirety we will no longer fear stigma from without or within.

When My Son Was Admitted to the Neonatal Intensive Care Unit

 

Evan waiting to be admitted to the NICU
Evan waiting to be admitted to the NICU

When Evan was born one of my dearest friends had just given birth to a beautiful baby girl three weeks earlier. I anticipated lots of days happily sharing with each other our joys of new parenthood.   Unfortunately when my son was admitted to The Hospital for Sick Children’s Neonatal Intensive Care Unit my solid ground started to shift out from under me.

One day I was speaking with her on the phone when she told me how upset she was when they did a routine heel poke on her daughter.  (They poke the baby’s heel with a needle to get a few drops of blood for testing)  I am ashamed to say my response was not the supporting empathetic response she was expecting.  I believe I said something to the effect of….

“I held my newborn son down today while the nurse shaved his head and put an IV in his scalp because his arms and legs can’t support an IV anymore.”

Lorena, I am so sorry.  Your pain was no less valid than my pain.  I wish I had been a better friend.  I wish I had told you I know it is devastating to hear your baby in pain and not to be able to fix it.  I wish I had comforted you with the reminder that a few seconds of pain would never be remembered when held against a life time of love.  Xoxo

Evan was in the NICU for over 3 weeks, during this time we received many emails and messages of love and support.   My sister in law had called to tell me she wouldn’t be visiting Evan… she couldn’t handle it.  I didn’t respond to anyone.  I didn’t know what to say.  I didn’t know how I had gotten here. My ground had become shifting sands and I couldn’t find my footing.

I was suddenly the mother of a beautiful baby boy that held my heart in his little hands and I was frankly not sure what the outcome would be.  I was the mom who whispered a fevered “Thank You God” when they said they were just doing a heel poke.   I was the mom who guarded access to Evan with determination of a ferocious guard dog.  I allowed only immediate family to visit him and then not often.

 I couldn’t share… not my son and certainly not my pain.  I kept much of it bottled up, only to have it surface as ugly anger, jealousy, and just pure snarkyness.   

I was terrified for Evan; I hated not being able to help him understand why these people kept hurting him.  I hated looking into his big blue eyes and seeing the pain and fear.  Would he remember this pain of his first few weeks?  Would he associate it with me?  Would he hold me responsible for not protecting him from it?  What would the rest of his life look like?

The guilt was mine to hoard, no one could take it away from me.  I was his mother I had one job, to carry him and keep him safe.  I failed, I failed the one person I love more than life itself and it would change the course of his life.  It didn’t matter who told me that I wasn’t responsible.  Nothing I had done or not done had caused the umbilical cord to wrap around his neck.

I would wear and carry this guilt for years to come.    I no longer had ground to stand on everywhere I looked was only quicksand.

If your baby is in hospital please be gentle with yourself.  I assure you, this was not your fault.  Your baby will love you, and not blame you for any of it.  Reach out and let the others in…. they love the baby too. Pain can be lessened when it is shared.

What is your hospital story?  I suspect I’m not the only parent who has lost their way temporarily while mired in quicksand.