Patient Communities Patient Story

Connecting through community: Building a support system to meet your needs

I remember the day that my life changed forever. My parents sat me down at the kitchen table to tell my sister and me that our mom tested positive for Huntington’s Disease (HD). I did what most people do when first learning about a new diagnosis; I Googled, ‘What is Huntington’s Disease?’

I read the following symptoms that my mom was experiencing:

  • Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain (Mayo Clinic)
  • Poor coordination, wobbly movements, and slurred speech often looking like a person is drunk….Check
  • Difficulty concentrating and prioritizing tasks…Check
  • Mood swings, easily irritable, and a loss of motivation… Check

However, the two pieces of information that stood out the most to me was that there is no cure and once diagnosed, the average life span is 10 to 20 years.

I learned all of this at the age of 15, and I felt isolated. I looked at my friends’ parents and saw them as “normal.” I felt like I lost out on what a normal childhood entails and had no one who truly understood what I was going through. It was at that time that I discovered my first online community through an AOL chat room (anyone remember those days?). I started off as a lurker since this was my first time connecting with people in the HD community outside of my family and I didn’t know how people would react. What I loved about the chat room was that it was anonymous and I could share as much or as little information as I felt comfortable sharing.

Over time I went from a lurker to someone who asked questions, and then to someone who helped steer conversations. I felt comfortable around others who could relate and understand the day to day challenges of HD.

Five years after finding out about my mom’s diagnosis, I got tested for the disease since each child of a parent with the disease has a 50/50 chance of inheriting it. It was at that time I found out I tested positive for HD and could end up one day just like my mom. I knew I could put those results in my back pocket and not do anything about it or use them as motivation to fight back and get even more involved within the community. I chose the latter and haven’t looked back.

I started by identifying my support system of people who would be there for me through the good, bad, and ugly. It wasn’t easy to break the news to friends and family, especially as a guy who tries to be the strong one for others. However, I realized I could let my guard down and be vulnerable around the people who were going to be there for me throughout my journey. But what I also learned was the importance of finding a community support system who I could relate to. I was tired of trying to be someone I wasn’t just to fit into society. It was mentally draining to act differently because of the fear of being judged based on HD. I decided to surround myself with people who don’t define me for my disease but see me for who I am as a person.

I was drawn to other young adults in the HD community because they were going through similar struggles that I was currently facing; how to talk to friends and romantic partners, family planning, living a new normal, among other issues. This was the group of people I have been looking for and finally found. At that moment, I knew I wanted to use my own personal experience to help other young adults find the proper support and resources in life.

Years later, I expanded my network of support outside the HD community to include advocates from other health communities. I realized how it didn’t matter if we had the same condition since we dealt with the emotional toll of living with a health condition. This led me to start up Our Odyssey to better support young adults in the rare and chronic communities by providing year-round programming. There are millions of young adults (18-35 years old) who are impacted by a rare or chronic condition and feel isolated from their peers. We are changing this by offering year-round, in-person and virtual meetups to provide a sense of belonging and connect young adults to others who simply get it.

Organizations like Our Odyssey, are essential as we all deal with the uncertainty of the COVID-19 pandemic. I, along with many other patient advocates in the community, know what it’s like to live with the unknown. It’s scary to face alone with nowhere or no one to turn to.

While it can feel scary and isolating facing uncertainty in your health and the world around you, the most important thing I have learned on my journey is that no matter where you are in your health journey, there are resources and support out there to help you. The important thing is to find the resource that aligns with your needs. Everyone’s needs are different so don’t feel like you need to have the same resources as your family or friends. Find something that works for you!

Before searching for a community, ask yourself what type of support and resources you’re looking for and how will they help with your unmet needs. If you’re looking for a community where you can be anonymous, then you could go to Inspire. If not and you are looking for something else, then search on Facebook for the specific group that addresses your needs. If you’re a young adult looking to connect with others, check out Our Odyssey, Next Step, or Stupid Cancer who provide resources and support to young adults in the rare, chronic, and cancer communities. Finding a social health network will help all of us as we deal with the next phase of the pandemic.

Due to my journey, I was able to find the one thing that gives me purpose–helping people find the resources or support they need when facing adversity. Even if we just met, I want to find a way to help you out because that is what keeps me going each day and gives me hope, especially during the COVID-19 pandemic. Let’s connect!

Seth Rotberg
Seth Rotberg
Seth is a patient advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. He has over 11 years of fundraising, advocacy, and volunteer experience within the health space. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). At the age of 20, Seth also tested positive for the disease and is a gene carrier. Rather than dwelling on these results, he decided to use them as motivation to fight back and get more involved within the community. In 2019 he co-founded the nonprofit, Our Odyssey, to connect young adults in the rare and chronic communities with social and emotional support. Seth currently resides in Boston, MA where he works professionally as the Patient Engagement Manager for Inspire.