For my husband, it’s harder living with epilepsy than hemophilia
The neurological disorder results in many challenges, misunderstandings
When people hear about epilepsy, they often picture sudden, dramatic falls, frantic efforts to keep the person safe, and looming threats of injury.
For my husband, Jared, these are indeed valid concerns. “What if he falls?” “What if he bumps his head?” These questions cross people’s minds — and mine, too.
But there’s more to Jared’s experience than these fears. Beneath the surface, epilepsy has changed him in ways that few can see. And unlike hemophilia, which he was born with and learned to live with, epilepsy entered his life later, an unwanted guest that upended his hard-won sense of normalcy.
A sudden intruder in Jared’s peaceful life
Hemophilia was Jared’s first adversary, shaping his life from day one. He grew up knowing that he’d have to be cautious, that bumps and bruises meant something different for him than for others. And while it was difficult, he eventually found ways to accept it, make peace with it, and even befriend it, to the extent that he might miss hemophilia if it were to suddenly go away.
Hemophilia was a part of him, an inseparable piece of his identity. But epilepsy? It barged in unexpectedly, an intruder that made Jared feel betrayed by his own body. Without hemophilia, epilepsy would likely never have entered the picture. It was a hemophilia-related brain bleed that triggered the neurological disorder, leaving Jared with a bitter “what if.”
When it comes to acceptance, hemophilia and epilepsy feel worlds apart for Jared. He was prepared to manage hemophilia, trained almost from birth. But epilepsy blindsided him, adding a layer of uncertainty and risk that he never asked for. It’s like living with a shadow that follows him everywhere, reminding him that he’s not as in control of his life as he once thought.
Jared often says that hemophilia is something he lives with, while epilepsy feels like something that lives within him. This subtle but profound distinction highlights how hemophilia feels familiar and manageable to him, making it easier to accept its effects. Epilepsy, on the other hand, remains an unwelcome and unpredictable stranger, making its challenges harder to embrace.
The most unique challenge of epilepsy
For Jared and me, epilepsy is uniquely challenging because it’s unpredictable. Unlike hemophilia, where he can manage, anticipate, and treat bleeds, seizures strike without warning and often cause him to lose control of his actions, making him question his body’s stability and independence. Even with medication, his seizure frequency can only be reduced, not completely eliminated.
His doctors have advised him that there’s no certainty about whether he’ll ever be fully rid of seizures; they’ll simply work on reducing their frequency with medication.
Jared craves a life of meaning, one that’s not overshadowed by constant safety concerns. Though he’s cautious, he also wants the freedom to pursue joy and fulfillment on his own terms. Because of this desire, epilepsy isn’t just a medical risk for him; it also creates a personal struggle for dignity and autonomy. It’s a reminder of the unpredictability that disrupted the sense of control he had with hemophilia.
Jared’s wish for living with epilepsy
In Jared’s journey with epilepsy, he has but one simple wish — and it’s not to be cured. In working to accept that his epilepsy may be lifelong, he simply wishes to be seen and treated as a human being, equal to anyone else, whose identity, dreams, and freedom are validated and valued.
While Jared’s epilepsy requires caution, it doesn’t diminish his drive to live fully. I’ve learned that supporting him means respecting his need for independence, not solely focusing on safety. It often means carefully weighing the two and making choices based on what matters most in the moment. If the consequences of his choice to take a risk are potentially minor, I’ll wholeheartedly support him — especially if it’ll mean something to him!
Note: Hemophilia 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.