Finding balance in relationships can be difficult with chronic illness

My husband, Jared, and I have a great connection. In the nine years we’ve been together — five as a married couple — we’ve never run out of things to say. Every day brings a new topic to discuss.

Conversation flows easily between us, even if it’s about a controversial or polarizing subject. In fact, these are some of our favorite topics. When we’re fully engaged in such conversations, we both get caught up in a state of flow. Time appears to go by faster than it normally would.

The ease with which we converse often gives other people the impression that we have an easygoing dynamic. This is true about 95% of the time, if I were to give it a number. What most people don’t see, however, are the complex discussions that take place in the remaining 5% of our time.

These conversations often revolve around a single subject: Jared’s chronic illnesses and the complex ways they affect our family, marriage, and future.

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Hemophilia isn’t much of an issue for us in the big picture. But the seizures that resulted from a childhood cranial bleed make things far more complicated, as they’re the primary cause of Jared’s present limitations.

These limitations aren’t just “in his head.” They’re very real and they affect me and our family. His seizures make driving (or even traveling without a companion) unsafe for him. Yet driving is often seen as a critical skill for employment, socialization, and self-esteem — and for one to function as an independent member of society.

We’ve figured out a solution to this: I drive instead. Meanwhile, Jared takes on other responsibilities that I have no time or energy to handle. This works most of the time. But when I am sick and unable to drive, it becomes difficult, as neither of us can get the things we need. I often feel pressured to stay as healthy as possible so that our family won’t have to face the consequences of both of us being impaired. This is sometimes counterintuitive, because pressure not to get sick tends to cause the opposite result.

Ideally, a healthy couple embraces the thought that having a fully equal relationship is unrealistic in practice. Each partner recognizes that giving one’s all may not always be feasible, and that it’s perfectly acceptable to contribute 80% while the other person gives 20%, and vice versa, depending on circumstances. Both individuals must understand the importance of balance and flexibility in their relationship. This understanding allows partners to adapt to life’s challenges and fluctuations without placing undue pressure on themselves or each other.

At times, however, this is much easier said than done. When one person feels responsible for 80% of the work most of the time, burnout and compassion fatigue find their way in. Sometimes, merely following generic advice on the internet isn’t enough to make this feeling go away.

Jared realizes this, and is often the first to acknowledge the imbalance. Numerous times, he’s told me that he doesn’t pressure me to stay in our marriage past the point of unhappiness. I know where he speaks from whenever this comes up in conversation. It’s a very real sentiment stemming from a deep understanding of the other’s feelings. It’s selfless in nature, demonstrating willingness to let go of one’s own desires in lieu of what they feel is best for the person they love.

It’s a complex sentiment with multiple philosophical dimensions to it. On one hand, I feel honored that he thinks of my well-being that much. On the other hand, it makes me feel confused. How can either of us claim to know what is truly best for our spouse? How do I even know what’s best for myself? Our marriage has its challenges, but it’s also brought so many good things into our lives — our daughter, my mental stability, and more freedom for Jared, to name a few.

It’s an open question with no answer in sight or mind. Perhaps there is no answer at all. As I get older, I realize that several things in life aren’t in our control. Ultimately, life is about doing the best we can with the things that we can influence through the small choices we make each day.

As for me, I’m doing my best to choose my husband each day, even when things get difficult. These complex conversations remind me that marriage has its ups and downs, but at the end of the day, it’s a living commitment to always choose our partner for as long as we possibly — and willingly — 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, and are intended to spark discussion about issues pertaining to hemophilia.