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.”