When he married his wife, Cory Huff knew she had been suffering from Neurocardiogenic Syncope since her childhood.
My wife has had a chronic illness called Neurocardiogenic Syncope since she was just 12 years old. It causes her to pass out or become very weak several times each day.
We’ve been married for over a decade. Over the years I’ve had several people ask me, “Did you know that she was sick before you were married?” The answer is yes, of course I did. Their response is often along the lines of, “Wow, that’s really brave.” As anyone who has had a sick spouse knows, it’s not really bravery. It’s love.
Marriage and being a good husband are sometimes difficult all on their own. All relationships are fraught with miscommunication and emotional baggage. Caring for someone who is chronically ill comes with its own set of challenges.
Making long term plans is difficult to do. My wife and I have always been big dreamers. We want to travel the world, see new things, and take on new challenges. Because of her illness I have learned that we won’t always be able to go places on the dates that we plan.
One couple we know recently went on a trip to London. Every moment was planned and scheduled. They ran around frantically from place to place, seeing as much as they could . We never do that. We’ve become flexible and more relaxed. Usually when we go somewhere on a date or a vacation, we have a loose plan that we fill in after we get there.
We spent our second wedding anniversary cooped up in a hotel room in Cedar City Utah, just outside of the Utah Shakespeare Festival, because after getting there, she couldn’t leave the hotel room. I really wanted to be out catching as much of the festival as possible. We ended up staying in the hotel room, watching TV, and talking in between her dozing. It turned out to be a great experience that we talk about often. The simple experience of enjoying each other’s company, even when one person isn’t feeling well, can be a great memory.
There’s a great deal of guilt associated with not being able to make my spouse healthy. Seeing others in pain causes a visceral reaction that makes me want to fix the problem. It’s emotionally taxing to see her suffer and be unable to do anything. My protective instinct tells me I’ve done something wrong because my wife is suffering and I’m not.
Like many men, I become focused on fixing the problem instead of finding out what my spouse actually needs at the moment. There have been times when I’ve been so busy trying to make her comfortable or take care of something that I didn’t realize all she wanted was for me to embrace her while she cries, or to play a game with her and chat so that she doesn’t feel lonely.
I’ve developed some interesting coping mechanisms through the years. I love my wife and our time together a great deal. There are times, I have to admit, that it’s all a little bit much for me. Here are some of the ways that I handle it.
Taking time for myself. It can take a lot of energy to care for someone who is ill. I try to schedule time for activities that I enjoy, that rejuvenate my spirit, that give me the energy to go care for my spouse. It took me time to recognize that this was not selfishness but a form of generosity. We best care for others only when our own basic needs are met.
Communication. The very ill sometimes don’t realize how demanding they are being. My wife and I had to develop our communication skills to the point where I know how to tell her when I need space. She had to learn that taking space allowed me to come back with better care for her.
Surrounding myself with supportive people. I could actually do better at this, but my wife’s condition is relatively rare. Cancer patients and other more common illnesses have lots of support groups. I do my best to surround myself with positive and supportive friends.
Educating myself. I thought I understood what my wife’s heart condition was when we got married. It’s pretty different when you see it up close every single day. I decided to educate myself about her condition. I went online and read studies, talked to many different doctors, and participated in online forums for those who had this same heart condition. There is now a number of Facebook groups for people with Syncope as well.
When I first began to understand my wife’s health, I wasn’t as balanced as this article makes me seem. It took a lot of talking, prayer, education, and trial and error for us to come to a happy balance. I expect that will continue to happen as we go through life and her condition evolves.
This article originally appeared on A Good Husband.
Photo by SodanieChea