Because of Chronic Illness, My Husband and I Evaluate Our Relationship Regularly

As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear.

Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with attention-deficit hyperactivity disorder and bipolar II disorder midway through our marriage. For us, every day is a practice in understanding each other and delivering responsive care.

Over the years, we’ve embraced the ebb and flow of life with chronic illness. This will likely remain a permanent pattern throughout our lives.

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Maintaining our emotional health as individuals and partners is important since we both face a significant amount of stress on a regular basis. Having a chronic illness is stressful physically, emotionally, and financially. The sheer amount of practical adjustments required to navigate everyday life with limitations can exhaust even the most patient person. That said, it would simply be impractical for us to allow our relationship to turn toxic and morph into yet another stressor.

According to the U.K. website NetDoctor, “A toxic relationship … is characterised by a lack of support, understanding or empathy, either from one party or both. It may involve disproportionate emotional responses to actions or situations. ‘There can also be competitiveness, undermining and disrespect,'” says Neil Wilkie, founder of The Relationship Paradigm.

Empathy is of extreme importance to chronically ill and disabled people. Through empathy, a person can stand in the shoes of someone who seems very different and see them as an equal.

Jared and I must constantly work on our relationship with the passion of a young, dating couple, and the sincerity of long-married elders. Now that we have a daughter, our attention tends to be split and skewed in her direction, especially since she asks to be noticed and acknowledged quite often. Many of our conversations also revolve around her — the interesting things she does, and our future dreams and plans that involve her.

Yet it’s important that Jared and I find time to exchange unfiltered thoughts, ideas, and constructive criticism and be fully transparent with each other about our needs and wants. That is necessary for the health of our marriage.

We constantly check each other for signs of codependency, which causes people to have an exaggerated sense of responsibility for others and a tendency to confuse love and pity. It’s not hard to see how codependent behaviors can emerge in a relationship between a disabled person and their nondisabled (or less severely disabled) partner, as the “savior versus saved” dynamic is an easy pattern to fall into. However, this is extremely unhealthy and can impede people from having a healthy, mutually satisfying relationship.

In some ways, Jared is forced to be dependent on me. Because of his seizures, he cannot safely do activities such as driving or going somewhere by himself, and I’m the person he trusts to give him assistance. This dynamic is dictated by his physical limitations and cannot be rearranged. However, we must actively avoid becoming hyper-reliant on each other, or depending on each other too much for our own happiness.

We must also constantly reevaluate our physical capacity so that we don’t end up relying too much on the other person for things we can do by ourselves. To request a service now and then is fine, but to expect this service from the other person even if it inconveniences them is toxic.

Our ultimate goal is to have a growth-oriented marriage. We challenge our self-imposed limitations by learning ways to do important things. Even if it’s stressful at first, it will become less so in the future. It’s essential that we each learn to carry our own load in our relationship to the extent that we’re capable. In doing so, we lighten each other’s burden — as partners in a healthy relationship 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.