What do people with hemophilia actually need?
Correcting some misconceptions about how to support our loved ones
When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can miss the mark.
People with chronic illnesses often carry a heavy, invisible burden: the societal pressure to “fix” themselves. This pressure often comes from a well-meaning desire for stability — a way to hold on to the hope that life can be easier if they find the “right” approach. However, as my husband, Jared, who has severe hemophilia B and epilepsy, reminds me, managing a chronic condition is more about adapting to reality than perfection or discipline.
An insightful Instagram Thread by @the.chronicillnesstherapist captures the dichotomy between what people with chronic illnesses (or their loved ones) think they need, versus what they actually need. These points resonate deeply with me, reminding me of the various assumptions I’ve heard about Jared’s needs.
Here are a few I’ve encountered:
Assumption: People with hemophilia need excessive rest
More accurate: Rest is important for everyone, but people with hemophilia don’t require excessive downtime — unless they’re dealing with an active bleed or injury.
When Jared has a bleed, rest is nonnegotiable. But during periods when his hemophilia is well managed, he’s as active as anyone else. In fact, staying physically active is essential for his overall health. Exercise helps maintain joint stability and muscle strength, which are crucial for preventing injuries and bleeds in the first place. Even household chores or light activities count as valuable movement.
What people with hemophilia really need is balance — rest when required, but also the opportunity to build stamina and strength. Jared’s commitment to fitness has allowed him to enjoy a high level of stamina, which in turn has allowed him to feel less burdened by injuries.
Assumption: People with hemophilia need constant protection
More accurate: People with hemophilia need empowerment, not overprotection.
One of the most common reactions I’ve seen is an instinct to wrap Jared in Bubble Wrap to shield him from potential harm. While this comes from a place of love, it can feel stifling. As his wife, I do not wish to baby my spouse. It’s a big NO in marriage advice!
Treating someone like they’re helpless doesn’t offer the support they need. Instead, it takes away their independence and dignity. Jared has taught me that people with hemophilia aren’t fragile; they’re adaptable. With proper treatment, self-awareness, and precautions, they can take on challenges they enjoy! Jared loves feeling useful — whether it’s by excelling at work, doing home repairs, or pursuing his favorite hobbies.
Instead of exercising caution beyond reason, what may actually benefit them more are:
- Trust: Trust that they understand their own bodies and limits.
- Support: Not through overprotection, but by helping them pursue the activities they love with reasonable adjustments.
- Education: Learning about hemophilia can dispel many myths that lead to unhelpful assumptions.
Jared often says that living with hemophilia isn’t about avoiding life’s risks altogether; it’s about learning how to navigate them wisely. For him, living well means balancing rest with activity, health with enjoyment, and safety with freedom.
Assumption: A good community helps people with hemophilia gather
More accurate: There is a great need for a community that shares openly and connects genuinely. This is what we aim to create within various groups and organizations, yet many of their duties seem to end at distributing clotting factor or hosting gatherings.
It’s important to note that this isn’t necessarily the organizations’ fault. Underfunding, understaffing, and lack of awareness shape what these groups can offer.
While events and social gatherings can be meaningful, they are often one-off experiences, leaving families to wonder: How will this help us in the long term? Similarly, mixers for young people with hemophilia bring together individuals from different backgrounds, with varying treatment access and support needs. Though intended to foster connections, the lack of structure may leave attendees struggling to form meaningful relationships. The overarching challenge is that many people living with chronic illness, as well as their caregivers, feel isolated despite these efforts.
People with hemophilia and their families can benefit greatly from safe spaces where they can openly discuss their thoughts and emotions without fear of judgment. Having mental health professionals on board may also help. They can hold guided sessions to help both patients and caregivers articulate their struggles, connect on a deeper level, and develop tools for navigating their unique challenges.
Shifting the narrative
Ultimately, people with hemophilia and other chronic conditions need understanding and support tailored to their reality. By shifting our perspective from seeking perfect solutions to embracing responsiveness and adaptability, we can create environments where people like Jared can live fulfilling lives, despite their challenges.
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.
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