It just slipped out that one time. I wasn’t even thinking. My husband, Jared, and I had been talking casually about how some of his friends had taken up cycling, when I made the offhand comment that he might be able to do the same. After all, I said, other hemophiliacs are into sports. Maybe he could get involved, too.
When Jared asked me who was doing it, I mentioned names of people in other countries. These were “model” people with hemophilia whom I idolize and look up to. They take their health conditions in stride, push against other people’s expectations, and transcend their own self-imposed boundaries. Surely these are people worth striving to emulate!
In that moment, I wasn’t aware that I had committed one fundamental mistake. I had forgotten completely that we live in the developing world, where opportunities are relatively scarce compared to more developed countries. In our country, the Philippines, basic healthcare costs a fortune. Average wage-earners struggle to meet their most basic needs of food, shelter, and medication. Our already burdened healthcare system must prioritize the needs of the vast majority, and as a result, people who live with rare conditions do not get the attention they need.
And yet here I was, comparing my husband to people who happen to have more opportunities because of where they were born or where they live. It wasn’t a fair comparison, and I should have known better.
I find consolation in the thought that I’m not the only one who’s made this mistake. In a post on Everyday Feminism titled “5 Lessons I’ve Learned As the Partner of Someone with an Invisible Disability,” the author describes a period of financial stress. His chronically ill partner couldn’t work at the time, and as the sole provider, the author worried that he and his partner would be unable to make rent. The author ended up asking his partner “to push through it,” not knowing why this was hurtful. Being the “healthy” partner, he had absolutely no idea that this was dismissive of his chronically ill partner’s feelings.
Nothing changes the fact that insensitive remarks are hurtful. Stress cannot be turned into a convenient excuse to “explain away” the harm done. But the truth is, no person is perfect. “Normal” partners of chronically ill persons are especially prone to making mistakes because they are trying to understand an experience that is so different, so alien, from their own.
Admittedly, I still have a lot to learn about my husband’s condition. I will never fully understand his life because my lived experience is different. I grew up exposed to maxims like, “If you dream it, you will achieve it,” and never had to face obstacles as cumbersome and limiting as my husband encounters on a daily basis.
My husband often tells me he’s used to the world saying no to him. Managing expectations is one way he copes, so that he doesn’t have to feel disappointed. He doesn’t cling to lofty dreams or ideals that he probably will not achieve. Instead, he simply makes the best of what he does have. My comment hurt him because he felt that I was making unfair comparisons and pushing him to cling to unrealistic expectations. I didn’t think of this, because I was stuck in my own mental paradigm that “dreams do come true.”
I’m keeping this mistake in mind as I embark on my imperfect journey to become a better partner than I was in the past. I want to be more conscientious about what I say and how I react, so that I don’t end up invalidating my husband’s perspective. A huge part of this involves learning to be aware of my own privilege. That way, I can acknowledge my own biases and be more conscious of other people’s life experiences and struggles.
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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