I rely on caregiver support to maintain my independence

A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because she got a small glimpse into my world for the first time.

Living with spinal muscular atrophy (SMA), I’ve faced mobility challenges my entire life. While my mother’s injury will heal, my condition is permanent. For many people, a temporary limitation is an inconvenience. For those of us with rare diseases, it’s a lifelong reality — one that often comes with barriers to healthcare and accessibility challenges, as well as maintaining a caregiver system and constantly fighting for our right to belong.

Her injury didn’t just affect her; it profoundly affected me as well. My mother is my primary caregiver, the person who ensures my daily needs are met, from helping me get comfortable to managing essential tasks that I cannot do on my own. When she couldn’t move as easily, the roles reversed unexpectedly.

I found myself not only worrying about her well-being, but also facing the overwhelming reality of how fragile my support system is. It was a stark reminder that, unlike her temporary injury, my need for a caregiver is permanent, and when that care is disrupted, so is my entire world.

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During those weeks, we had to rely on others more than ever. It reinforced something I already knew: Independence for people like me is often an illusion without a strong and reliable caregiving network. Yet securing consistent, quality care remains challenging for many people with rare diseases.

This experience deepened my gratitude for my mother, but it also highlighted the urgent need for better caregiver support systems, policies, and resources for those of us who don’t have the luxury of recovery.

One of my worst fears is what will happen when my mother can no longer care for me. It’s something I try not to dwell on, but moments like her recent injury force me to confront it.

The reality is that finding reliable in-home caregivers is incredibly difficult because navigating the system feels like an uphill battle. I worry that one day, the only option left will be a facility that may seem like care to many, but to me feels like a loss of everything I’ve worked so hard to maintain: my freedom, my dignity, my ability to live life on my terms.

I’ve spent my entire life adapting, building a world that allows me to thrive despite my physical limitations. But independence for people like me isn’t just about accessibility; it’s about having the right people to support us. It’s about policies prioritizing home care, fair wages for caregivers, and a system that doesn’t make us fight for the fundamental right to live in our homes. The thought of losing that because of a broken system is terrifying. I don’t want to be confined to a place where I have no control over my daily life simply because society hasn’t prioritized better solutions.

This is why advocacy matters. It’s why awareness days, including the forthcoming Rare Disease Day, aren’t just about sharing stories but about pushing for real, meaningful change. No one should fear losing their independence simply because the world hasn’t figured out how to care for them properly. My fear is real — but so is my determination to fight for a future where people like me don’t have to choose between getting the care we need and keeping the lives we love.

Note: SMA 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.