As I write this, I’m struggling with something I think only a person in my shoes could understand. My fragile joints have once again made a seemingly simple everyday task feel like scaling a mountain. In this case, just the idea of sitting down on a toilet seat has a grasp on my mind throughout my day. I’m afraid doing this will cause pain in my arm that has inexplicably started ailing me due to its severe stiffness. 

The extra physical effort required to do this now literally takes my precious breath away and makes it difficult to communicate with my dad, who assists me with this. Then there’s spending nearly all my waking hours sitting in a wheelchair. When I reach the end of each day I’m flooded with soreness in my lower body. On top of this discomfort, I’m exposed to an enhanced risk of pressure sores and infection.

Duchenne muscular dystrophy (DMD) throws a series of subtle daggers at those who live with the rare condition and their care providers. I’ve been able to hear the concern in my parents’ voices when stressful events like the ones mentioned above occur. I can imagine them seeing me experiencing these things can be enough to keep them awake at night. 

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I’ve also witnessed this when they occasionally air their frustrations with the specialists I see because of something they feel crosses a line in my care. They have been my caregivers for my entire 28-year existence. I will say that they’ve moved heaven and earth to provide the best possible care and support. My doctors have said how impressed they are with how strong my family’s foundation is. On the other hand, this makes me sympathetic to the families who have a tougher go of it.

On February 28, there are some who take part in Rare Disease Day. The unique hindrances that patients and caregivers within the rare disease community encounter both in health care and their personal lives are given attention on this date. It’s a particularly meaningful day for charities dedicated to these conditions. The National Organization for Rare Disorders is one of them. They advocate for improving the lives of patients and families battling these diseases. Parent Project Muscular Dystrophy is another one, specifically for DMD advocacy.

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The world revolves around sports for me in my free time. A mental health professional once told me that my endurance to overcome these daily impediments could be compared to that of an athlete. I like this metaphor since much of the training and practice sports figures undergo is often done off the field or court—therefore unseen by spectators. Similarly, with DMD I have a silent struggle that even my closest friends and family are probably unaware of. 

If you know a rare disease warrior, be mindful that they have physical and mental scars that you probably don’t see or can fully comprehend. Supply them the understanding and empathy they deserve.