Finding love with Duchenne muscular dystrophy

Updated Aug. 8, 2024

Readers of my column may recall one I wrote last December, titled “How I Define Love With Duchenne Muscular Dystrophy.” In it, I shared my heartfelt thoughts about relationships, romance, and love. Today, I have positive news to share: A few months after I wrote that column, I discovered what it truly means to be in love.

In April, I embarked on my first romantic relationship with someone I’d gotten to know by chance through an inclusive theater workshop. Growing up with Duchenne muscular dystrophy (DMD), I never in a thousand years thought that someone would fall for me. I’d almost given up on finding a partner or a soul mate to share my life with when love hit me square in the heart.

Experiencing a first romance is a common rite of passage for most young people, whether in the 21st century or in Shakespearean times. It might not seem like a big deal to most. But for a DMD survivor living in a conservative society that views disabled people only as objects of charity, it’s a huge deal.

It also happened in the aftermath of my grieving over a caregiver’s traumatic illness and her decision to return home to be with her family in the Philippines. I’m glad I now have a partner who accepts me for who I am and is willing to take care of me in the absence of my caregiver. I don’t worry about the future as much as I did before.

Still, anxieties, concerns, and fears abound. My girlfriend is visually impaired, which complicates matters a little.

Loving each other against the odds

My girlfriend and I have vowed to work together to build a life of fulfillment by drawing on our strengths. Being disabled doesn’t mean we’re incapable of doing things. We simply need to devise alternative ways of navigating this world. For example, my girlfriend can be my hands and legs to move around while I can be her eyes and illuminate her blind spots.

It may seem like a daunting prospect to live with a sensory impairment and a fatal rare disease while enduring ableism in society and surviving the adversity of a relationship. But as someone who has overcome death, depression, and many other setbacks, I’m unfazed by the proposition. I’m here for a reason: to bring the world hope, peace, and joy amid the chaos and gloom. As a disabled couple, we’re determined to beat the odds.

Enthralled by how much my life with DMD has touched me, I look forward to spending my first Christmas with the love of my life. Having DMD means that life is never simple or straightforward. But it’s taught me to embrace my identity as a disabled person. I value even the smallest of milestones, knowing that each one is worth the effort.

Note: Muscular Dystrophy News Today 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. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.