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Overcoming the shame and loneliness of being a caregiving spouse

Jann Lee and her husband, Nick.

My husband and I were at a restaurant with my family recently when I noticed a blank look on his face. His body was frozen and his right hand was gripped around his spoon.

I called his name softly and placed my hand around his. He remained still and a wave of anxiety overcame me. Although I've witnessed many of his seizures before, the level of discomfort never subsides.

My sister noticed me holding my husband's hand. "Everything okay?" she mouthed. I nodded, but she knew instantly what was going on.

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My mom also sensed a change in the table dynamics and looked at my immobile husband. "What's wrong? Are you okay?" she asked, a bit too loudly. My sister shushed her and changed the subject. My other family members seemed oblivious, eating and chatting among themselves. When my husband regained consciousness after a few minutes, I gave my sister a look of gratitude for intuitively allowing us a moment of privacy, a reprieve from questions and looks of concern.

My husband's seizure disorder has permeated our relationship from the very beginning. When I first met him five years ago, he was candid about being diagnosed with epilepsy at 15 after undergoing brain surgery to treat a serious bout of meningitis.

The ramifications of his invisible condition didn't sink in until much later though, since on the outside, my husband was far from what I imagined a person with a chronic illness to be.

He played hockey recreationally and maintained a stable job at a bank that required him to fulfill complex tasks. The notion of him entrapped in the clutches of a disorder seemed incomprehensible until a year after we met during a cottage trip with a group of friends.

I was jolted awake by his scream, which was followed by violent spasms that rippled through the bed.

I turned on the lights and found my husband (then my boyfriend), unconscious and overcome with convulsions.

I screamed for help and his friends rushed into the bedroom. Most, like me, were frozen in shock. One tried to snap my husband out of the seizure by shaking him: I learned later that it's best to leave someone alone and let the seizure run its course, but who could blame his friend? We were all stupefied and had no idea what to do. Although they had known him longer than I had, most of them had never witnessed him having a seizure of that magnitude.

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Crying hysterically, I called his parents, who were sleeping miles away. His mother calmly told me that he should be fine. Seizures, she said, only need medical attention if they continue past five minutes. The episode lasted less, but it felt longer to me. My husband eventually stopped shaking and we all went back to sleep.

The next morning, I acted like nothing happened, ignoring breakfast conversation about the incident. Our friends commented about how scary it was and some couldn't help but sneak glances of pity at me. It made my insides curl with embarrassment and frustration.

Much of that was about my husband's vulnerability – the mortality rate among those with epilepsy is higher than in the general population, and epilepsy is related to other causes of death, including traumatic brain injury, unexpected drug reactions and cardiac arrhythmias. But I was also in emotional turmoil about my responsibilities, and vulnerabilities, as his partner.

After dating for a few years, we moved in together. Soon after we got engaged, his seizures increased in frequency and he began experiencing both convulsive and non-convulsive seizures a few times a month. I started to become anxious about how his illness would affect our marriage, wondering if I could really handle the responsibility of being his wife and potential caregiver.

Ultimately, I decided to make that lifelong commitment because, as simplistic as it sounds, my love for him outweighed my trepidations over the illness and its weight on our relationship. But, as I had sensed during our engagement, our marriage has undoubtedly been affected by my husband's epilepsy.

I've had to barrel through my fear during an emergency, only to feel overcome by helplessness after seizures, wondering whether I could have prevented them. I became angry over the inconveniences that came with my husband's condition, such as his inability to drive or his dependence on daily medication. I nagged him about taking his medication and shouted in anger if he denied having a seizure after regaining consciousness.

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I pestered his stoic neurologist about how safe it was for him to ride a bike home from the train station at night. The doctor's response was a benign statement about how life is uncontrollable and that even a person without epilepsy can hurt themselves from falling off a bike. This placid, almost indifferent, statement gave me little comfort.

My husband's illness was something that I couldn't control, and my resentment over this grew, followed by more anxiety, and then guilt over all of these negative emotions.

Chronic illness can bring great challenges to relationships, says Karen Fergus, an associate professor of clinical psychology at York University. "Although the disease is located in one person's body, the illness is a responsibility that's shared by both partners in the relationship," she says. The partner, she says, is as important as the person with the illness.

Communication is key to any relationship, but even more urgent for couples managing the difficulties of an illness. "One of the traps that couples can fall into is protective buffering, when each partner is not disclosing important information because they don't want to burden each other," Fergus says. Such behaviour is counterproductive, because by withholding thoughts and feelings, both caregivers and their partners can end up feeling isolated and lonely in the relationship.

After years of avoiding conversations about how his illness affects our relationship, my husband and I finally spoke frankly this past fall, before his admission into the epilepsy monitoring unit at Toronto Western Hospital for a two-week stay. His doctor had concluded that my husband's medication was not fully effective at controlling his seizures and wanted to see if he'd be a candidate for a new laser surgery that removes scar tissue from the brain.

My husband told me how scared he was about the uncertainty of the treatment: Even if he qualified for the surgery, the side effects are still unclear. I shared the difficulties I've faced witnessing his seizures over the course of our relationship. While it was difficult to speak about our vulnerabilities, we both felt a sense of relief after finally revealing our candid emotions to each other.

During his stay in the hospital, I no longer felt compelled to hide our struggle. I had closed myself off from everyone, not just my husband, but friends and acquaintances, avoiding questions that would lead to me disclosing his epilepsy. I realized that shame has prevented me from seeking the support I needed – shame about his illness and shame about my guilt and negative reactions about having to take care of him.

Fergus says shame around chronic illness is more likely if the illness experienced has any associated cultural stigma. In my case, I'd never met anyone with epilepsy before my husband. My lack of exposure led to my discomfort, but when I visited my husband in the monitoring unit, I saw that many people and families also grapple with the outcomes of epilepsy.

There was a 24-year-old woman who had just graduated, a young man who had brain surgery after getting hit by a truck and a volunteer who testified that the laser surgery worked in alleviating his seizures. Their loved ones visited them daily, patiently waiting for updates from the doctors. I realized then that we're not so alone after all.

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