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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

What I learned from Nepal

With a goal of challenging ourselves both physically and spiritually, my childhood friend James and I decided that an off the grid trip to Nepal could not have come at a better time. Personally, I was looking forward to connecting with the locals and diving deeper in the Hindu and Buddhist faiths there. Despite growing up in a household with a specific faith (Judaism) I wasn’t completely connected to it. I think of myself as more spiritual than religious, where I take bits and pieces of each faith/religion to shape it into my own beliefs. I am a believer in signs that occur throughout life and I received many of them during this trip.

One of those signs came when we ran into this mountain dog at one of the teahouses. He was one of the many dogs we came across throughout our trek, yet this older dog decided to follow us two hours down the mountain. To me – I felt like the dog was a spiritual sign from above, making sure we got to our next destination safe and sound. Other moments like this occurred throughout the trek, giving me an extra boost of energy when I was struggling during certain parts of the hike.

The trek took about nine days to complete and rather than hiking Mt. Everest Base Camp or the Annapurna Circuit, we decided to choose the Khopra trail since it wasn’t as touristy. James and I decided to go through an agency where it was just the two of us and our tour guide.

The trek consisted of staying at teahouses with people from around the world, meeting locals from a village, eating Yak soup and Dal bhat (go-to food in Nepal), hiking to the hidden lake and Khayer lake, and reaching elevations of over 16,000 feet. It was definitely challenging, especially acclimating to the higher elevations, but I absolutely loved the cultural experience.

Here are a few of my takeaways from my trip to Nepal.

  1. Self- reflecting is something I am trying to fit into my everyday routine because it has helped me write out my thoughts while giving me time for myself and own self-care. One thing I decided to do (thanks to James) was to disconnect completely from my phone throughout the whole trek. This was my only opportunity to truly reflect on life, while taking everything in. Instead of having my phone, I journaled each day about what each day entailed, where I want to go in life, my fears, and what drives me each day to be my very best. This helped me release some of those anxious thoughts about the future thoughts we all tend to overthink.
  2. Reframe your negative thoughts into positivity or learning experiences. The local Nepalis live such a simple life, without complaining about the little things. Imagine living in a small room with no closet, taking bucket showers, and having an out-house as a bathroom? It made me dive deeper into my own life and how mad I would get at myself if something negative/bad happened in my life. I tend to hold myself to such high expectations resulting in high stress levels during these tougher times.  Ask yourself: “what did I learn about this experience and how can I use it to continue moving forward in life?”   I am always finding ways to improve this, but I realized that we can either dwell on our negative experiences while living life with regret OR learn from them to better understand what we can improve for the next experience.
  3. Don’t assume or judge someone before getting to know them. One day when we were at a teahouse, James and I were having a conversation with a few others. Suddenly, I noticed one person doing yoga mid-conversation, while others were stretching (downward dog) while chatting. It sounds little, but I learned that it is simply okay to be yourself and not feel like you have to act a certain way to fit into society. Sometimes I am afraid that people will view me a certain way depending on how I act rather than being myself and not worrying about what others may think.
  4. Listening is just as powerful as talking in a conversation. I felt a bit disconnected during one of the conversations with several others at the teahouse because we were talking about a topic I wasn’t quite familiar with. I felt like an outsider looking in which is never a great feeling. When I told James this, he told me that you don’t need to talk to be part of a conversation. Listening to others and asking questions when not understanding certain things is a valuable skill to have.

A lot of ups and downs in 2019 where I was challenged by my peers and society on how I truly live my life in the moment. Whether it was jumping too fast into a relationship, jumping to conclusions prior to processing the situation, or learning the importance of self-care prior to trying to help other people, I look forward to what 2020 holds. Namaste.