To Tell or Not To Tell

Can you imagine having a child who suddenly and unexpectedly experiences a health crisis? Perhaps you can. Now imagine that, in this case, you find yourself navigating the health care maze, doctor’s assessments and treatment team recommendations alone with no support. You stay silent, feeling like you cannot tell a soul what is happening, and at times it feels like you are hanging off the side of a cliff by your fingernails. You are making one decision at a time in the best way you can for the good of your child with no sounding board and little outside guidance. Can you imagine? Why would you do this without support? Are you fearful of sharing your story? Maybe you are worried that if people find out what you are going through you will be ostracized. Maybe you are afraid of being shut out of your social circles or being treated differently at work or where you workout.

Sounds absurd doesn’t it? And yet this is what it was like for me when my then teenage son slid into a deep mental health crisis almost overnight. Having never dealt with such a crisis, I had no idea how the stigma, shame and blame around mental health would personally affect me. I felt confused, alone and afraid.

Believe it or not, the first place that I experienced the stigma of mental illness was from within the medical community. I later realized, as we moved through multiple hospitals and facilities, the treatment teams blaming and shaming was not an anomaly but was many times the first “go to” assessment. Even given this, I truly wanted to share my story. I wanted to find others who were experiencing similar circumstances. I thought it would be helpful to sit down across the table from another parent and share our experiences, compare notes and maybe even give each other a little emotional lift in the midst of such scary crises. I didn’t think it would be so difficult to find other parents who wanted to talk and share. The waiting rooms at the hospitals and treatment centers were filled with parents who seemed to be in the same boat as me.

What happened next, though, was surprising. When I sought out parents and caregivers that I could talk to, I hit roadblocks and dead ends around every turn. It was then that I realized just how deep the blame and shame ran and how the stigma affected caregivers in a much stronger way than I had imagined. The few occasions when I thought I’d found someone to talk with ended without a connection; it was just too risky for them to speak openly about their situations. In one case, there was a caregiver who shared that other than the Doctor and her husband, not even her close friends knew what was going on in their son’s life. She just couldn’t risk the word somehow leaking out. Even her best friends did not know!

I am grateful that during my son’s crisis, my best friends did know and slowly I realized that others needed to know as well. I brought my family and friends into the mix and then my yoga and running communities. Neighbors soon learned about what we were experiencing. In full disclosure, I never formally told my boss or the people at work. Although this is a subject for another day, I will say that work was the place I felt the least safe to share my story at the time. (Since I went public with my blog and advocacy work, it no longer remains a secret.)

My blog, as well as my coaching and advocacy work, was born out of my desire to make sure my story and stories like mine are shared out in the open. Speaking my truth helps me to stay balanced in both physical and mental wellness. My goal is that speaking aloud provides hope and support to those who are not ready to fully disclose their caregiver stories.

Amy White