How to support a loved one with chronic illness
Well-meaning people often project their own perspectives rather than listening
Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others.
While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want to hear in a similar situation. While this comes from a place of love, it can sometimes feel misplaced, especially when the person receiving it desires a different kind of support.
This disconnect, I’ve learned, often arises from a lack of perspective. People tend to assume their needs and fears mirror those of the person they’re trying to support. But what if those assumptions end up doing more harm than good?
For people who don’t have a chronic illness, love is often intertwined with attention. Feeling cared for means feeling seen, supported, and protected. This perspective drives their actions, leading to advice or behaviors meant to shield a loved one from harm. Applying that to the case of my husband, Jared, they might insist on limits, discourage risk-taking, or suggest excessive periods of rest or idle time. These measures stem from a natural desire to keep someone safe and extend their life.
However, this mindset overlooks the experiences of those living with chronic illnesses. For many, especially those who value independence, being overly “protected” can feel stifling. Jared finds immense joy and purpose in being productive, even if it means taking small risks. The restrictions others place on him — no matter how well-intentioned — often clash with his sense of self.
This feeling isn’t unique to Jared. Many people with chronic conditions feel this way. They’re acutely aware of their health challenges and the need to balance activity with rest. But they also understand something that others might miss: that quality of life often matters more than quantity. It’s about getting out of survival mode and appreciating life and the opportunities one has.
The need for a different kind of love
What people with chronic illnesses often crave isn’t overprotection, but freedom. They want a love that empowers them to make choices and pursue fulfillment on their own terms. It’s also about trust: trusting that they know their limits, that they’ll ask for help when needed, and that their desire for autonomy and meaning is valid.
Unfortunately, this perspective can be difficult for others to grasp. The narrative of love as constant vigilance is so deeply ingrained in us that it can feel almost counterintuitive to step back. When my husband explains that he doesn’t want to be babied or treated like he’s fragile, the responses often default to “but [we’re/they’re] doing this out of love.”
This version of love can unintentionally alienate someone. Instead of fostering connection, it can block meaningful communication. The focus becomes what the supporter thinks is best, not what the person with the condition needs. Often, this dynamic relegates the person with a chronic illness into the category of mere “patient” rather than a thinking and feeling individual. The emphasis shifts solely to their illness, disregarding their humanity.
As Jared often says, “The last thing we need is an unlicensed ‘doctor’ to tell us how we ought to live our lives.”
“Perspective-taking” is a simple yet powerful term that can help us bridge this gap. It involves setting aside assumptions and genuinely listening to understand another person’s experiences. Instead of projecting fears or preferences, it’s about asking, “What does love look like for you?”
This approach creates space for collaboration. For my husband, it means finding ways to pursue activities he enjoys with adjustments that minimize the risks. It’s not about eliminating risk entirely but striking a balance that prioritizes both safety and joy.
As parents, Jared and I have started applying this lesson while raising our daughter. While we can guide and advise her, we also know that her life is hers to live. One day, she’ll make choices we might not fully understand or agree with, and we’ll need to trust her judgment. After all, isn’t that the foundation of love — giving people the freedom to be themselves?
Balancing care and independence
For those supporting loved ones with chronic conditions, the challenge is to balance care with independence. It’s not about withdrawing support, but offering it in ways that respect the other person’s autonomy and humanity.
Instead of focusing solely on extending life, consider what makes life worth living. This idea might mean taking calculated risks, embracing imperfection, and cherishing the here and now. It’s about understanding that what someone wants to do often holds as much value as what they need to do.
In the end, love isn’t one-size-fits-all. True love adapts. It listens. And most importantly, it lets go of control, trusting that those we care for are capable of charting their own path.
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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