This is the final countdown. The big day has finally come. Tomorrow, Saturday, Oct. 20, I am marrying the man of my dreams, Justin.
These days, it is hard to enter a relationship, especially when living with a rare disease that one can’t even begin to understand. Before I met Justin, it was difficult to find someone who I could not only connect with but also who would try to understand my disability. I was tired of disappointment. Eventually, I became comfortable with myself and my disability, then became unafraid to put myself out there. So, I joined an online dating service called Hinge.
I used to be against online dating because I thought it meant people were desperate to find someone or they were using apps as a last resort. My friend told me about Hinge, which at the time matched people up with others who have mutual friends on Facebook. It also shows people’s hobbies and interests. I felt comfortable using it for these two reasons. I also felt comfortable knowing this is simply the way people meet nowadays, and many success stories have come from it. So, one day I thought, “What do I have to lose?”
I reached out to Justin first and we went on a date within a week. (The place we went is now our favorite restaurant in Philadelphia.) We knew it was love at first sight. I know that is a clichéd saying, but we hit it off right away. It was very easy to talk to one another because we had many of the same interests in family, food, music, and more. It also helped that we share the same favorite Beatles song — I’m a huge fan!
I thought to myself that if this guy really likes me and wants to pursue a relationship, making him aware of my disease early on would be an OK thing to do. I was not afraid to tell Justin about Friedreich’s ataxia on our second date (within the same week as the first date). I let him know what the rare disease entails and where I currently stood in my diagnosis. I also mentioned what the future could bring, such as loss of walking independence and potential heart issues. None of that information scared Justin away.
While on the subject, Justin told me he also has a rare disease — Fabry disease. (Thankfully, Justin is currently receiving a biweekly infusion treatment that helps him.) That connection strengthened our bond. Although we may not know how exactly the other person feels and what they’re going through, we get a sense of the hardships inflicted by our diseases.
Justin and I have been together three years this month and engaged for almost two years. Justin had the perfect proposal at the Imagine mosaic in Central Park in New York City. Someone even played Beatles music on an acoustic guitar in the background; it was simply the sweetest moment!
Justin continues to prove every single day how supportive he is of my Friedreich’s ataxia journey. He is very attentive, caring, and thoughtful about my accessibility needs. He helps me to and from work every day, listens to me whenever I need uplifting, attends every FA charity event he can, encourages me to use my rollator, thinks of FA in every situation and how to accommodate, and more!
By leaving my comfort zone, I became self-confident and realized I deserved happiness and someone who would love me for me, despite my disability. I knew I found my person from the beginning. Remember that if you love yourself first, you will find the love of your life.
Here’s to starting this new chapter in our lives — a lifelong commitment and a successful marriage!
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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