Being Me: The Weight of Feeling Like a Burden

 

Living with dystonia is like carrying a weight that never lets up. It’s an invisible anchor, pulling at every effort I make to live as normally as possible. The struggle with my body is relentless. Muscles that refuse to obey, spasms that hit without warning — dystonia doesn’t care about my plans or my family’s needs. 

And sometimes, neither can I. 

As much as I want to be t
he one who takes care of my family — to provide for them, protect them, and be there in all the ways they deserve — dystonia has a way of keeping me from doing that. It steals time, energy, and ability, leaving me to watch as others step in to handle what I can’t. No matter how much they tell me I’m not a burden, there are days when that truth feels distant and hard to hold onto.  

It’s not just the physical limitations. It’s the emotional toll of knowing that I can’t be the person I want to be for them. Every time I need help with something simple, like opening a jar or getting through a task, I feel like a burden. I can’t shake the feeling that I’m weighing everyone down — even if they’d never say it.  

Some days, I watch my family handle things I should be doing, and the guilt creeps in. It’s hard not to see myself through the lens of what I *can’t* do. I want to help, but often, I’m the one who needs the helping hand. I know they love me, and I know they understand — but the weight of that understanding is heavy. 

It’s not easy to admit this, but sometimes I feel like I’m more of a strain than a strength in my family’s life. That may not be the truth, but it’s the reality of how I feel. My disease doesn’t just affect me; it touches every part of my family’s day. 

I miss the days when I felt capable — before dystonia took away so much of my independence. I miss feeling like I could carry my weight and then some. It’s hard to reconcile the person I want to be with the one that dystonia has shaped. 

Yet even in these moments of feeling like a burden, I know that love remains. My family doesn’t see me as less than, even if I do. They remind me of my worth in ways I can’t always see for myself. 

If you’re reading this and feeling the same way — feeling like your illness or limitations make you a burden — I want you to know you’re not alone. We’re all fighting battles that others can’t see, and sometimes those battles are within ourselves. It’s okay to feel what we feel, but it’s also important to remember that being loved and cared for doesn’t make us a burden.  

Dystonia may steal my strength, but it hasn’t stolen my family’s love. It’s that love that reminds me that, even when I feel like a burden, I am still enough. I may not always be able to care for them the way I want, but they care for me just the same. 

And maybe that’s enough.