Being a Young Adult during COVID-19

Myself, along with many other young adults in the rare and chronic communities, are feeling fearful, anxious, depressed, and frustrated. There are a lot of unknowns when it comes to COVID-19 (Coronavirus) and we all need to start taking it more serious, if we want to overcome this adversity.

When I first learned about COVID-19, I didn’t know what to expect. I closely monitored it. One of my good friends used to live in China (prior to the pandemic) and kept me informed about what was happening and cautioned how the US needed to prepare for what was coming. People my age and younger, think that because they are “healthy,” they don’t need to worry. Yet, this virus is so contagious that you can end up spreading it and impacting someone you know, or even worse, your own family.

I am fortunate enough not to be in the high risk category, but I do have many friends, family, and colleagues who are. They have been on the forefront of my mind and it’s tough to sit back and not be able to do more. In the meantime, I continue to try doing my part, by sharing articles on social media and discussing it with my friends and colleagues. I conveyed how some of my friends and colleagues, were afraid to leave their homes because of the risk factor.

Some are fearful there will be a shortage of medication. What happens if one of them does get COVID-19 and is rushed to a hospital that is already overflowing with many other people? The doctor may have to choose who they will help. My fear is if it’s between someone who is immunosuppressed and a “healthy” person, guess who the doctor will most likely pick?

I have been working remote full time now, for four months and I always make sure that each day I get out of the house at least once a day. Not being able to do that anymore sucks and it’s too frustrating to be inside all day. It is very isolating, especially since I live alone. I already struggle with anxiety. Being physically separated from friends and family only increases those anxious thoughts.

I know I am trying to do my part when it comes to social (physical) distancing while also figuring out different ways to both provide and receive support. I have been trying to do more journaling, FaceTime with friends and family, working out from home, and even online gaming with friends.

On top of all of this, my colleague, Anna Laurent, and I at Our Odyssey, have decided to host more virtual meet-ups through Zoom to support young adults in the rare and chronic communities. Since health conferences have been postponed for April, and May, we want to make sure to keep young adults connected.

What ways are you coping with COVID-19 and if you’re struggling, how can I help you find the support and resources you need during this pandemic?

Navigating Medical Information at Doctor’s Visits

There have been plenty of times in my life where I have been at the doctor’s office either as a patient or as a teenager when I was a caregiver to my mom, trying to grasp all the information the doctor is providing. The doctor used medical terms that I have never heard before, yet I would simply nod my head in agreement because I was nervous to ask him to explain what it meant. This goes back to my fear of being judged and luckily overtime I learned from my dad that no question is a dumb question.

One of the other challenges I have faced (and still face today) is being able to take notes while the doctor is speaking, while also making sense of each of the words being used. I can only write or type up a note on my phone so fast and it doesn’t help that I am not the greatest at doing two things simultaneously (but then again is that an actual skill?). Having a tool for even the most knowledgeable and busy patients or caregivers (like myself) makes life more manageable and can take the burden off of notetaking.

I recently spoke to one of the founders of an app called Abridge and before we started discussing the app, he shared his own story with me. He explained how he was inspired by his own family’s experience with a rare disease that he wanted to help others. The app is an opportunity to selectively transcribe the important medical parts of the discussion at the doctor’s office and even call out areas that it thinks may be included in the next steps of your care plan. Not only that, but it allows you to relisten to the conversation to better understand what he or she said while allowing you to review the information on your own time.

Abridge has a FAQ that goes over potential concerns such as data security and privacy. As a patient advocate and someone who works professionally in the health space, transparency is important in building trustworthy relationships with community members. It was reassuring to read these and know that they put the information in the hands of their users.

To be honest, I didn’t even think about how important an app like this was until I spoke with one of the founders. I sort of gave up on notetaking or trying to access information through one of the many different health portals. I felt like whatever I could take out of those visits or meetings were better than nothing. But now knowing there is a way to solve this issue for me and many other members of the rare disease community makes this even more exciting.

I know this would have been a huge help at all the doctors’ visits that my mom went to when she was still alive. I am excited for the next time I go into the doctor’s office and let the doctor know that I plan on recording it for personal use. One less phone call or follow up email goes a long way in the rare disease community.

Acting Now: Bring Young Adult Insight into Research

Lately, I have felt more motivated than ever to figure out how to get my voice heard when it comes to medical research. Over the last nine years of knowing that I tested positive for Huntington’s Disease (HD), I have only participated in two observational studies. The problem with this is that there are over 20 companies working on some type of treatment for Huntington’s Disease, yet I cannot participate whatsoever. Participating doesn’t necessarily mean joining the trial, but to work with these companies on understanding the needs of young adults who are either at risk or tested positive.

After being witness to the slow deterioration of my mom, I’m not sure pharmaceutical companies are focused on the right symptoms of HD. Yes, my mom had physical manifestations. Her balance sucked and people thought she was drunk, but perhaps more difficult for all of us were these terrible mood swings, major depression, feelings of irritability, and a lack of motivation. Luckily, despite all of this she kept her sense of humor and positive outlook on life towards the end of her battle.   

If you were to ask me what I would prefer, I would rather deal with the motor symptoms than the cognitive and psychiatric symptoms – but unfortunately, nobody is asking me or the thousands of other young adults who are at risk or tested positive for HD.

Young adults are the future of the HD community and will one day either participate in the trial or take an FDA approved drug, so how come our voices aren’t being heard now? Do we want to participate in gene therapy (one-time), spinal taps every 3-4 months, oral pill 1-2 times per day? What type of side effects are we okay dealing with? What symptoms would we prioritize from the many different motor, cognitive, and psychiatric symptoms?

I know someone is officially diagnosed with HD when showing motor symptoms, yet many young adults, like myself, wonder if there are earlier signs of HD through the cognitive and psychiatric symptoms.

 I know we cannot look too far into the future and need to remind ourselves about living in the moment, but there is a difference between being pessimistic and realistic about the future. Some people tell me I am being too pessimistic/negative when I am trying to be realistic about what might happen. It’s important to understand what I can do today to not only live in the moment but also make a difference to advance medical research in HD. Young adults, like myself, are hungry to get involved in medical research and provide our insight. To those 18+ companies out there trying to find effective treatment or a cure for HD – let’s chat on implementing the young adult voice so that we are fully prepared when the time comes that you begin targeting those of us who have tested positive but are pre-symptomatic.

Dating while Living with a Rare Disease

No one wants to end up alone, especially when living with a rare disease. Yet, ever since I tested positive for Huntington’s Disease at the age of 20, I felt like I have been racing against time. This is especially true when it comes to dating. Although I am still pre-symptomatic but guaranteed to get HD with no current treatment options, I tend to feel like I need to settle down faster. My mom started showing symptoms when I was about eight years old which means she was sick most of my life. I don’t want the same thing to happen to me. I want time to develop a relationship, and spend time with a wife and kids.

Any romantic relationship, regardless of health challenges is not an easy thing. In fact, a friend recently compared dating to a job interview; you may not get the right match the first time around but eventually you’ll find the best fit. I try to remind myself that it takes time and a lot of patience to find the right match. I realized I cannot go into new relationship assuming this is my soulmate and sometimes acknowledge that each interaction is a steppingstone to figure out my wants and needs in a partner.

One of the biggest challenges I have faced is how to not be defined by my condition and to be seen for who I am as a person. Anyone could simply Google me since my story is fairly public. When dating, I am not sure sometimes how much the person knows and what they learned about Huntington’s Disease. Learning about any health condition without a cure can be very intimidating and could cause someone to see you for your condition rather than who you are as a person. That has happened several times to me, where one time they said, “that seems, pretty scary.” I wanted to respond with “no sh*t it is, but let’s not worry about it right now.” That relationship didn’t end up working out and she actually ghosted me eventually.

Did that suck? Absolutely because I immediately think it’s my fault. In fact, I see it as another failure in my life. That’s exactly what happened in my most recent relationship. Although it wasn’t the long term relationship that I expected, if I reflect back, I learned some important lessons.

  1. Slow down– In other words, how can I continue to remind myself to live in the moment and not look so far ahead into the future. It is a lot easier said than done when you see your parent slowly dying and realize that could be me one day. Although my friends continue to tell me not to worry about it I feel like sometimes they don’t put themselves in my shoes when I see that I only have 15 years left until I may show symptoms and I won’t have as much time to enjoy life with family. Yet, I also realized if I try planning my whole future, I end up losing out on enjoying each day of my life. Anything could happen to anyone and then you end up missing out on what is happening in life today. I know that when I find someone I truly love, time is thrown out the window because I am enjoying that person’s companionship.
  2. Listen – It took a wake-up call from a friend for me to truly grasp the idea of listening. I always turn to my friends for advice, but in reality I am asking them to validate what I want to hear. Reality check – that is not getting advice nor listening to my friends. I learned that often times I wouldn’t listen in a relationship and rather jump to my own conclusions. I never took the chance to process what my romantic partner would say and simply take a step back. It’s important to not assume your own thoughts and to truly listen to what your partner is trying to tell you. Don’t take things personally, repeat back what they say for clarification, and ask questions when confused.  
  3. Be authentic – When you feel like you’re racing time and rush things, you tend to do anything you can to make the relationship work. That is exactly what I did. It actually helped me though because I regained a sense of faith and was able to learn more about what my true beliefs were. Yet, I feel like in some of my past romantic relationships, I would try new things or act like I enjoyed a certain activity because I simply wanted to be in a relationship. Eventually, I realized that I need to be loved for who I am as a person and shouldn’t have to change who I am to be in a relationship. It’s like putting a square piece into a circle; it will never fit no matter how hard you try.

Life is all about timing. I know things will work out when I least expect it. Until then, I am going to continue to be who I am – Seth Ian Rotberg.

Take a listen to this podcast I was featured on that goes into more details about the challenges I have faced while dating.

“Give yourself the time you need to grow, to evolve, to become everything you are meant to be.”

Vulnerability is not a sign of Weakness but a sign of Courage

2019 was a year in the books. I co-founded a nonprofit, Our Odyssey, to better support young adults impacted by a rare or chronic condition, I traveled to the Dominican Republic to celebrate my close friend’s wedding, spoke at various conferences about my patient journey, and traveled to Nepal to self-reflect on life. However, I struggled a lot with being open to others about what has truly been going on behind the scenes. Vulnerability is one of my themes that I hope to improve going into 2020.

Like many guys, I am always trying to be stronger for others, especially my friends and family. It’s not that I don’t want to show my emotions, but I want to be there for others while not feeling like a burden. I never want people to worry about me so I tend to only share my emotions to a select group of friends. Yet, things changed when I was having a conversation with a colleague who shared how it is okay to be vulnerable and challenged me to be more open with my feelings. She suggested that I start by watching Brené Brown’s TED Talk on vulnerability.    

One of the biggest takeaways I took from her talk was when she said “What you realize is that connection is why we’re here. It’s what gives purpose and meaning to our lives.” If you know me at this point in life, you know I love to not only connect with people, but connect people to one another. But what does connection truly mean? It doesn’t mean a one-off conversation but instead to build a deep, meaningful relationship with someone else. Yes, I am an open book, but that’s because most people see the guy with a smile on his face, living a happy, cheerful life each day. But deep down inside that wasn’t always the case. I had days where I struggled to get out of bed due to my anxiety or feeling like I wasn’t good enough for my friends or society as a whole. I still feel that way sometimes and if something goes wrong, I immediately blame myself and take it as another failed part of my life.

I wasn’t done there and decided to dig a little deeper. A friend of mine saw an Instagram post I made about Brené Brown’s TED talk and sent me one of her books that discussed how to find a true sense of belonging while also having the courage to stand by yourself. What I enjoyed about this book was how it dove even deeper into vulnerability and how you need to be able to belong to yourself first before trying to fit in with others. For me, that means I needed to learn how to respect my own boundaries, hold myself accountable to my actions, and be nonjudgmental to myself and others. I tend to hold myself to such high expectations that when things don’t work out, it is a failure and I should be the one to blame (and no one else). But I am working on shifting this mindset to learn from mistakes while managing my expectations to a level where I won’t be so hard on myself (or on others).

It takes a lot of courage to be able to admit when you are struggling or having a bad day, but I am finally okay with accepting this part of me. I am not perfect and I will have my moments or days where I am not okay; but it’s about going to my support system when I need a place to turn. For me – this is my friends, family, rare disease community, and therapist. And when it isn’t a particular person, it’s turning to ‘Whose Line Is It Anyway?’ for a good laugh and reminder that I will be okay.

“Vulnerability is not weakness. I define vulnerability as emotional risk, exposure, uncertainty. It fuels our daily lives.” – Brené Brown