How Chronic Illness Makes My Husband a Better Parent

My husband, Jared, and I are currently in the process of looking for preschools for our daughter, Cittie. She’s almost 4, but sometimes she acts and speaks as if she’s much older. Cittie often tells us that she wants to go to school. Although we refuse to rush her academically, we also honor her desires and interests. Plus, preschool would allow her to socialize, play, and explore with other children.

In this present chapter of our lives, I can’t help but contemplate what our future as a family might look like. We’ll likely have typical parent duties, such as attending school orientations, parent-teacher conferences, sports events, and recitals. Jared has always been a hands-on dad, and I imagine that he would never want to miss a single event!

Still, there remains a real possibility that he may need to bow out of some activities due to his health conditions. Because Jared has severe hemophilia B and a seizure disorder, there’s always a chance he will endure a debilitating bleed or a random seizure. As with any chronic condition, timing is everything.

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Occasionally, I can’t help but worry that a poorly timed bleed will lead to my child feeling left alone during a big event. I would be there for her, of course — but seeing as she’s so close to her dad, she might misconstrue his absence as abandonment, especially if this were to happen while she is still young.

Like many parents, I’m sensitive to being seen as an uninvolved or absentee parent. Realistically speaking, some parents simply cannot attend their children’s events, even if they want to, because they are sick. This could be a regular occurrence if the parent is chronically ill.

Chronically ill parents do exist!

I’ve encountered many other parents with mental health struggles, like myself, and physical health issues, like Jared. Yet there’s not much conversation happening about us and our experiences. Worse, there is also some degree of stigma against parents who are chronically ill, as some people are socially conditioned to think of disabled people as incapable of many things, including parenting.

The lack of information about chronically ill parents may also contribute to the stigma. Internet searches don’t bring up much information on the topic. And the few studies I’ve read that deal with the effects of a parent’s illness on their children aren’t too comforting. One research article, published last year in the journal Frontiers in Psychiatry, noted that parental chronic illness may increase the risk of social-emotional and behavioral problems in children and adolescents. Definitely not the kind of outcome I’d like to see in my family!

Interestingly, though, I’ve seen the opposite unfold in my personal circles. Most of the chronically ill parents I know are raising emotionally healthy and happy kids. And though it’s still somewhat of a mystery to me, I’m starting to understand how.

A friend of mine recently shared a touching conversation she had with her child. Her child said that they were grateful for her illness, “because it meant that she works twice as hard to be a good mother.”

I’m sensing the same phenomenon with Jared. He often says that Cittie is the best thing to have happened to him, and it shows in the way he treats her. Even when he is debilitated, he does what he can to accompany, accommodate, and comfort her.

Now that she’s starting to have thoughts of her own, he encourages her to be open about her feelings. He tries not to put himself above her; as a result, he isn’t dominant or commandeering. He often emphasizes that he is merely a teacher or guide. He also keeps himself open to criticism. At her current age, Cittie doesn’t criticize much yet — so he usually starts the conversation by asking if she thinks he did something wrong.

Jared tells me that growing up chronically ill quashed his ego at times, because people often thought of him as less capable than everyone else. As a result, he often second-guesses his ability to be a good parent. But I actually think it’s quite the opposite: He learned to be a gentle and empathetic parent. And in this day and age, a kid needs that.

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.