Thoughts on marriage, disability, chronic illness, and love

Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard it as a legal arrangement — albeit a powerful and binding one that changes every aspect of a person’s life.

Some believe the beauty of marriage lies in its permanence. Others value marriage because of the difficulty it entails. The process of finding the right person is no easy feat, of course. So when one does find that person, it’s viewed as a huge accomplishment.

As someone who has been married for five years, I believe there’s a grain of truth in all of these perspectives. My husband, Jared, and I have been together for nine years. Our marriage is founded on the premise of partnership: being the best person for our partner so they can be their best self. We both believe that together, we can achieve bigger things than each of us could on our own. We also believe our marriage gets better and stronger with time.

Our partnership is rewarding, but some aspects of it can be challenging in practice. His two chronic conditions — hemophilia and epilepsy — require me to be his partner and carer. Whenever his illnesses strike, I am duty-bound to care for him.

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I’m not a ‘better partner’ for choosing to stay

It bothers me when people praise me for staying with my husband despite his chronic illnesses, as if to compare my choice with others who aren’t able to do the same.

Staying with Jared is my personal choice. I stay because I love him and admire his character. More importantly, I stay because our partnership is more or less balanced, like organisms in a symbiotic relationship, helping each other help themselves.

Jared can’t drive because of his seizures, but I can, so I do it for both of us. Whenever I’m feeling unstable due to my mental health issues, he takes on whatever responsibilities he can to lighten my mental load, whether it’s waking up earlier to prepare food or tending to our daughter’s needs when I’m too burned out.

Although our lives sometimes get difficult when he’s incapacitated due to a bleed or random seizures, those are tiny blips in the big picture. At the end of the day, we consider our partnership to be between equals. We each contribute equitably to our marriage.

With chronic illness, one’s best can look different each day, but we always strive to give our best on a particular day. We also constantly reevaluate our relationship to make sure we’re able to satisfy each other’s needs.

I stay with my husband not out of social expectation or mere duty. I stay because I care about him and his well-being, and I can see that he does the same for me.

Other people may have different circumstances

The reasons a carer-partner may choose to leave their chronically ill partner are varied and often highly personal. Some may have lacked the resources or support to stay. Others might have experienced difficulties within the relationship. Partners are human at their core, whether they have a chronic illness or not.

Leaving a meaningful partnership is never easy. And breaking off a marriage inevitably comes with a certain degree of pain.

I’ve heard stories of people ending relationships with their chronically ill partners because they could no longer bear the responsibility for their partner’s care, often for financial or mental health reasons or other factors that were out of their control. I couldn’t fault them for leaving, because at the end of the day, it was the more loving choice for them to turn over their partner’s care to someone better suited to the task.

Jared often tells me that he knows his care isn’t easy. And because he loves me, he would never obligate me to stay up to the point of unhappiness — to which I respond, “I’m happy to care for you.”

My message to those who leave

To the partner-carer who chooses to leave: I know it’s difficult, and I don’t blame you.

Whatever reasons you have for leaving, I honor them. I trust that you genuinely believe you made the best choice for you and your partner. But if you must end things, please do so with respect for the other person.

You know you loved them from the bottom of your heart, and because of that, you gave your very best. And really, that’s all we’re trying to do.

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.