Coming Out of the Closet as a Thalidomide Survivor

by | Jun 28, 2016

Until recently, I did not identify as a person with a disability. When I was a child, I knew deep inside that having an obvious birth defect was a source of shame to your family, even if nobody ever said that. Or maybe because nobody said that. In fact, the truth about the cause of my birth defect was deliberately kept from me until I demanded to know just a few years ago.

I was told that “God made me” this way. My Catholic upbringing made me believe it was my cross to bear bravely, and that’s what I’ve tried to do. I was determined to do something positive in response, such as represent other marginalized people through politics.

When I learned that Chemie Gruenenthal could have prevented my burden by pulling their drug from the market long before my mother became pregnant, I was stunned! I suppose we can still say God chose me but greed and power are completely different than an accident of nature. Now, I am even more determined to make something good come of my situation, and that is by sharing my story.

For nearly 45 years I was in deep denial about how much this affected me emotionally. All the fears and suspicions I had squelched my whole life were suddenly impossible to deny. When the suppressed emotions began to bubble up, I suffered anxiety, depression and post-traumatic stress disorder (PTSD). Mental health issues being another source of shame in our society only added to my difficulty.

My husband, daughters, aunt and a close friend have helped me through this difficult shift in my self-identity and processing the grief I never allowed myself to go through. Grief over the many things and possibilities that were stolen from me when my mother took just one or two thalidomide pills at seven weeks pregnant.

When our interim pastor put me on the prayer list at church recently, because of my chronic pain and upcoming appointment at Mayo Clinic, I was finally able to discuss my situation honestly with people who asked. It’s uncomfortable for me to be sharing all of this now but as I do, I’m finally coming to full acceptance.

I appreciate all the love and comfort of my dear friends and family over the past few weeks, most of whom never knew my story.

The day after posting the above on my Facebook page, I awoke feeling as if I had come out of the closet as a thalidomide survivor. I was relieved to share my true feelings but also anxious about how this knowledge might affect others’ perceptions of me.

The response to my post was overwhelming. Tears streamed down my face as I read the many heartfelt messages. I never doubted others’ love and support but very few understood my life experiences. My journey continues…

(This essay was first published on a former blog “View From the Hill, Reflections on Life” by Carolyn Farmer Sampson.)

Written by US Thalidomide Survivors