Reflections on the Meaning of Support in a Caring Relationship

Alliah Czarielle avatar

by Alliah Czarielle |

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During the month of August, my husband, Jared, and I are happily celebrating our third year of marriage. Though the past few months have been rocky on account of the pandemic and some aspects of our family life that appear out of our control, we remain happy and grateful to be with each other. Both of us agree that love is a verb, and as such, every relationship is a work in progress.

During our three years of marriage, I have unlearned so many misconceptions about persons with disabilities (PWDs) that greater society taught me at a very young age. When I was growing up, I constantly heard that PWDs should be seen as equal to others, but the subtle tone people often used to describe their apparent “deficiencies” communicated quite the opposite message. As I got to know Jared, I saw for myself that the extent of the abilities of a PWD often exceeds other people’s perceptions of them. What’s more, they can become even more capable with the right support.

These days, I constantly reflect on the question, “How do I define support?” It is common knowledge that an effective support system is extremely helpful to a PWD. Through my marriage with Jared, I have learned that it’s also important to properly define what support entails, because our ways of showing support to a PWD can bring either help or harm.

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With PWDs, a truly supportive carer should understand their desire to live life as active contributors to society, and their refusal to burden others. Many have lived with their conditions all their life, so they know their limitations best. The carer, in my experience, should serve as a backup to help the PWD follow and stick to the path of self-care they deem best.

The carer can be the PWD’s sounding board if they are trying to reevaluate their decisions. Nonetheless, the PWD still has the final call. A truly supportive carer acknowledges the PWD’s right to live their life on their own terms, not as other people think life ought to be lived. No one else has to understand — after all, only a fellow PWD can come close to comprehending what it’s like to live with chronic illness.

Jared has been through so many hardships. Countless times, he found himself on the verge of giving up, only to pull through once again and face the next day as a brand new one. After everything he’s been through, he tells me his wishes are simple: make others happy, help his loved ones’ dreams come true, and spend his life doing the things that make him truly happy. In short, it’s about putting more life into the years.

I’ve been happiest to support Jared’s journey toward independence by helping him perform self-infusion. This helps our marriage as well, because it brings us closer to the healthier dynamic we desire. New research shows that keeping one’s individuality is one of the “secrets” to a lasting marriage, and for this to happen we must avoid codependency however we can.


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 Services, and are intended to spark discussion about issues pertaining to hemophilia.


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