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A Rare Love

Updated: Apr 12, 2023

Loving someone with a rare disease is not easy at times. But what happens when both people have a rare disease? Something beautiful occurs…

Finding love is hard. Being a young adult is hard. Having a rare disease is hard.


Being a young adult with a rare disease trying to find love? Extremely hard.


A young adult living with a rare disease has a lot going on: their body doesn’t cooperate, they have multiple doctor’s appointments and hospital visits, and their family might be seemingly overly involved in their life. And this is on top of all the “regular” adult things that are required: education, work, bills, and a social life.


Loving a person with a rare disease requires the exact opposite of what most people want. In today’s society, many people don’t want commitment. They don’t want responsibility. They don’t want to form a deeper connection. They want quick and easy.


There are, however, those rare exceptions.


My boyfriend, Nick, and I both have a rare disease. He has spina bifida (a congenital birth defect which causes a person’s spine to either not fully form or be disconnected from the lower half of the body) and I have ADCY5 movement disorder (a rare genetic condition which affects mobility). We both use wheelchairs to get around.

Nick and I met on Bumble, a dating app, on April 29th, 2021. I showed my wheelchair in my profile, Nick did not. There is definitely something to be said about Nick knowing that I used a wheelchair and him still swiping right and taking a chance on me. Nick and I clicked instantly. Not only do Nick and I have a rare disease and both use wheelchairs, we both had also never been in a romantic relationship previously, we were traditionally minded, and we wanted long-term (date to marry). At the time, Nick was 27 years old and I was 24. We are now 29 and 26. Additionally, we are both very involved in the disability community. I do advocacy work for rare diseases and Nick does adaptive sports.


Nick and I became best friends first. We were friends for a year before we started dating. We have now been in a relationship since May 17th, 2022. We have an extremely healthy relationship considering it is both of our first romantic relationships ever. We are also currently an hour and a half apart so we are in a long distance relationship, but we have plans to close the distance this summer. Nick is hoping to propose this summer and already has my engagement ring in his possession. We hope to get married next year.


The way I compare our medical conditions is that my insides are normal, but Nick’s are not. My issues tend to be external, while his are more internal. I receive more passive medical care and Nick requires more active medical care. I mostly have checkups every six months to a year, whereas Nick has regular appointments with his specialists and hospital visits a few times a year.


Relationships are hard when just one person is medically complex. The non-medically complex one often becomes the caregiver and main support of the medically complex one. It sometimes causes stress and strain on the relationship. Nick and I are both medically complex, so we know our relationship and future together is not going to be a smooth roll in the park.


The beautiful thing about our relationship is that we are fully aware of what we are getting ourselves into and we still continually choose each other. We want to get married and we want a family. We don’t want those things with anyone else.


We are willing to learn each other’s needs and we take care of each other emotionally when one of us is having a hard time. We have both faced bigger obstacles throughout our lives and we view being together as just another obstacle that we have to overcome. We are wholeheartedly taking on the commitment and responsibility that many people shy away from.


We know that with any relationship, we will have our health issues and they will always be a part of our package. Our connection and unconditional love for each other, however, is as rare as we are.


***


Lilly and Nick want to share their love story with others to provide a sense of what’s possible. There are many stories out there about inter-abled couples, but not many on doubly disabled couples. They want to foster a community among doubly disabled couples because they face unique challenges and obstacles. They believe support from those who are in similar situations is so important.


If you or someone you know is in a doubly disabled relationship, the Doubly Disabled Couples Support Group is a Facebook group that Lilly and Nick created to provide a place where doubly disabled couples can come together to share stories, support, resources, tips, tricks, and gain a sense of knowing they are not alone.

 

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