We were settling down in the living room to relax after putting our daughter to bed for the night. I was sitting on the leather sofa with my legs curled up next to me. The setting sun was shining through the front windows, casting a warm glow across a wall filled with books, green plants, and an antique camera.
It was a beautiful time of day.
My husband was sitting in a cozy, checkered armchair across from me, watching a video on his tablet, when I interrupted him.
“Should I update my LinkedIn profile?” I asked.
He yanked on the white cord hanging from his head, popping his earphones onto his lap.
“Didn’t you already do that? What are you waiting for?” he replied.
“I’m not sure it’s a good idea,” I said.
I was nervous about adding my writing experience to the platform because all of my stories are intensely personal. I felt like I would be announcing to everyone that I was gene-positive for Huntington’s disease, something I didn’t share with too many people at work.
“Stop worrying about it and do it,” my husband said.
I’d had a variation of this conversation with him at least a half-dozen times. He’s been encouraging me to update my profile for months, but I was afraid of the consequences. What if I got fired from my day job and couldn’t find another one? I let my fears stop me, even though I’ve been trying lately to live out of the shadows, secrecy, and shame.
A few years earlier, I had started writing in my spare time about my experiences with genetic testing and infertility, because I wanted to give a voice to our collective struggles. I know how hard it can be to speak up, and how difficult life is when you feel alone.
Over the past two years, I set up a website and various social media accounts. I write this monthly column and share my stories on several other sites, including The Mighty. I have spoken at two conferences, and the Huntington Society of Canada interviewed me for publication in their newsletter.
These things were not easy for me to do. Sometimes I felt nauseous, while other times I’d get a migraine from the stress and have to go to bed. I stopped at LinkedIn because I was afraid of being negatively judged by my peers.
That beautiful spring evening, my husband sipped on his coffee and patiently listened as I weighed out the pros and cons of updating my profile. I told him about a fellow writer who was getting good engagement on her stories on LinkedIn. When I finished, he said, “Of course! I keep telling you it’s a good idea. Just do it already.”
“Ok, I’ll do it tonight,” I said. Finally, I was ready to face that fear.
I grabbed my computer and sat at the dining room table working. I changed my profile to freelance writer and published author. I updated my career objectives and uploaded links to all of my stories. Once everything was listed in one place, I felt proud of myself.
I showed my updated profile to my husband. “I have come a long way, don’t you think?”
“Looks great, hon, way to go,” he said, giving me a high five.
The next evening, I received a message from one of my LinkedIn contacts. It said:
“I just was scrolling through LinkedIn and saw that you liked someone’s post, and it caught my eye that you’re a writer and published author. I thought, that’s so great! Then I read your About section and was struck by your candour and kindness. I was just reading about Huntington’s because of a beautiful profile in the New York Times about Dr. Nancy Wexler, a research pioneer, and one of the most inspiring people I’ve ever read about. Please share more about your writing on LinkedIn so I can read it. Your community of fans may be larger than you realize.” Erica
When I saw that message, I walked straight over to my husband, read it to him, and gave him a big hug. “You were right!” It was proof that people in my professional life could be accepting of my diagnosis.
By stepping into my fears about what might happen, I am choosing not to be controlled by them. Instead, I am allowing for new opportunities in my life. Who knows where this might lead. It is one more step on my journey toward living in the light, away from the secrecy and shame of my diagnosis.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?