Sometimes ‘handling illness well’ means avoiding feeling like a burden
Being transparent allows caregivers to better understand how to help
My husband, Jared, carries his hemophilia well. At first glance, he appears healthy, with a solid physique, and he actively engages in sports. The keloid scars running down his arms contribute to his rugged charm.
Some might dub him a model hemophilia patient, an example to follow. During meetings at a hemophilia organization, fellow caregivers often sing praises about his muscular build and lack of visible joint damage. Here in the Philippines, a country where the quality of hemophilia care lags, many hemophiliacs aspire to such a state.
Jared effortlessly lifts heavy objects, brushing off admonitions with confidence, thanks to his dedication at the gym. Despite our busy schedule as the parents of a preschooler, he remains physically active by managing household chores.
When he experiences a bleed — an unpredictable and sudden event — he promptly administers an infusion and rests. Still, he insists on continuing to fulfill his responsibilities unless he’s totally incapacitated.
He also prefers solving problems independently, showing a strong inclination toward DIY repairs, recipes in the kitchen, and other hands-on tasks.
‘Handling illness’ or fear of being a burden?
I once read online that when people say “you handle your illness well” it often implies you don’t burden others. There’s both a bright and dark side to this notion.
The positive aspect is avoiding causing trouble for others. This alleviates the heavy mental load on caregivers, which can lead to poor mental health in the long run. However, the downside is a reluctance to seek assistance.
Jared confesses that during his younger years, he would sometimes conceal his bleeds to avoid inconveniencing others. He always felt guilty about “bothering” the person infusing him with blood-clotting factor.
Today, after learning how to self-infuse, he no longer requires help with medication. Yet he’s now more open to notifying me if he needs assistance with other things, such as self-care or household responsibilities. He acknowledges that being transparent about how he’s feeling helps me understand how I can help him better.
Our daughter’s ‘strong girl act’
Recently, I’ve observed our young daughter exhibiting a “strong girl act” of her own. Not long ago, she caught a seemingly mild cough and cold. School was canceled due to heavy rain, which had caused numerous students to become sick. Our daughter never once mentioned feeling unwell, maintaining her usual cheerful demeanor and watching her favorite gaming videos as usual. Consequently, we had no reason to suspect anything was amiss.
During her afternoon tutorials, she displayed mild resistance when asked to get dressed, a common behavior when transitioning between activities. Later, she persevered during the tutorial session, actively participating and even joking around during breaks.
However, a few minutes before her class was due to end, she suddenly rested her head on the table and fell into a deep sleep. This was unusual, as she had never dozed off during a class before. Her teacher noted that she seemed to be coughing frequently, despite her playful disposition.
Her slumber was so profound that we couldn’t wake her. Her teacher and I had to carry her, along with her belongings, to the car. At home, she continued to sleep until nighttime.
Upon waking, she was once again her cheerful, active self. When I asked if she felt unwell, she responded with a resolute shake of her head, denying any discomfort. I felt equal parts of admiration and worry at that moment. While I thought it was so brave for her to power through her illness quietly, I worried that she might start to develop a fear of inconveniencing others with her troubles. And in doing so, she might unknowingly invalidate herself and struggle to have her own needs met.
When I mentioned this to Jared, he responded, “I think she got that from me.”
Even the strongest need help sometimes
It’s important to remember that even the strongest people, like Jared and our daughter, sometimes need help. Their resilience is admirable, but seeking assistance when necessary is a sign of wisdom and strength in itself.
As caregivers and loved ones, we can actively encourage them to seek assistance whenever they require it. We can do this by continually reassuring them that they are never a burden to us, and that we are always here to support them through any challenge they may face. We may struggle with providing some care at times because we are merely human. But because we love them, we will never see them as an inconvenience.
In this way, we not only alleviate their burdens but also strengthen the bonds of love and support that define our relationships. Love, after all, means always being willing to extend a helping hand. It’s an unwavering commitment to another person’s well-being and striving to help them become their best selves.
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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