Many of my peers are living knowing there is a tomorrow, presuming that it is as healthy as it is today. Unfortunately for me, I am living knowing that one day I could end up developing Huntington’s Disease (HD), just like my mom. This means I could slowly deteriorate, both physically and mentally, to the point where I will be unable to do anything independently.
At age 20, I made the decision to go through genetic testing and found out I tested positive for the disease. In the blink of an eye, the way I lived my life changed; how to talk to friends and family about it, dating, career path, family planning, among other things.
As I see news stories across various social media channels highlighting how many young adults aren’t taking COVID-19 seriously, it frustrates me. I have seen many young adults walking around Boston without wearing a mask, not realizing how easy it is for this virus to spread. Young adults living with a health condition better understand the significance of this virus because we understand what it’s like to live with the unknown. I understand that young adults don’t want to miss out on living in the moment; I do that as much as possible, each day. But, as we see cases starting to go back up, we need to rethink how we live in the moment.
I understand the urge to get out and enjoy summer. However, there are ways to do this while keeping you and your loved ones safe from contracting COVID-19. The two main ways are practicing social distancing and wearing a mask when you’re around others (and wearing it properly too, which means covering your mouth and nose).
One of the scariest aspects of COVID-19 is how many people — especially healthy teens and young adults — might have it without even realizing it. It takes just one person to spread it like a wildfire. What happens if you end up spreading it to someone at higher risk of serious side effects, hospitalization, and even death? If you test positive, how will you feel about telling everyone with whom you’ve been in contact?
When I tested positive for HD, I asked myself similar questions. Who do I tell about testing positive? How will I feel about telling others? Will I be treated differently and defined by my disease? It took me three years to tell my dad, sister, and others that I tested positive. I sometimes joke that I came out of the genetic disease closest because I was now open with testing positive for HD.
Although I tested positive for HD, it doesn’t put me in the higher risk category for COVID-19. But, I have friends and family who are more vulnerable, so I wear a mask and keep up with social distancing.
The difference between me and other young adults is that I’m living knowing what the future holds. I have my days where I am not sure if dropping my phone or forgetting a conversation with a friend is a symptom of the disease or just something I’m overthinking.
What I remind myself each day is how I am in control of my own decisions, and no one else’s. We all can decide to do our part to slow the spread of the virus. It is up to young adults — the future leaders of society — to make the right decisions by socially distancing and wearing a mask. If not us, then who?
Seth Rotberg is a patient advocate and motivational speaker who cofounded the nonprofit, Our Odyssey, to connect young adults in the rare and chronic communities with social and emotional support. He is the Patient Engagement Manager for Inspire, a health-care social network of more than two million patients and caregivers.