Caring For a Wife With a Chronic Illness

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.

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.

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

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About Cory Huff

Cory Huff is a husband, actor, storyteller, digital marketing strategist, and active member of the Church of Jesus Christ of Latter Day Saints. He runs The Abundant Artist where he teaches artists how to dispel the myth of the starving artist. He lives in Portland, Oregon with his wife and two cats, Kieren and Laoch.

Comments

  1. A great article. It is very apparent you are a kind and loving individual. Still, it must be hard. You mention taking time for yourself and communication as two coping mechanisms–prayer with a loving Heavenly Father can also be tied to these two ways to deal with the issues you and your wife face. I know I come away with a different perspective and a renewed commitment when I get up off my knees. All the best to you and your wife!

  2. Tyler Seamons says:

    I am so with you. I didn’t know my wife had health conditions until about six months after we were married, and even then it took a decade to get a decent diagnosis, let alone a cure. Peace unto you both.

  3. John Smith says:

    My wife also has a chronic condition, ME/CFS. I can relate to everything you say. Sometimes I want to scream, sometimes I think “why do I do this.” Especially when I see other people with happy and healthy lives together, but the I remember, because my wife means the world to me.

    It annoys me when people say how brave I am, or she is living with ME. To be brave you chose to do something. We didn’t chose her illness, it is just something we have to live with. You get on and live your life as best you can with what you have.

    Yes, she drives me up the wall at times when she dose not realise what I do for her, but I love her non the less for it. As long as I get my space when I need it. One evening a week, no matter what, I get a brake and she has to look after herself. It takes it out of her, but the other six days take it out of me just as much.

    • John Smith says:

      Oh yes, I forgot to say, I count myself lucky that she can look after herself, even if it is hard work. So many don’t even get that choice.

  4. As someone who has suffered for 10 years from chronic illness, I appreciate this article a lot. It’s very hard not to feel like a burden, so knowing of the love and also having good communication and healthy boundaries is so important.

    If you haven’t had a chance to listen to Pres. Eyring’s talk from the RS broadcast this year, I highly recommend it. It’s such a great talk that speaks directly to caregivers. I think those who are already caregivers can likely help others in the Church understand how the ‘system’ can better work through councils, etc. to help those with chronic, long-term needs — and to support and help and relieve those who support them.

    http://www.lds.org/broadcasts/article/general-relief-society-meeting/2012/09/the-caregiver?lang=eng

  5. Nathan tynan says:

    I have recently my wife ( never officially married) to cancer after a 3 year battle, and I read your story and understand it all, the people who tell you how brave and good you are for sticking by her don’t understand that anything else isn’t an option. In the marriage vows it says sickness and health. It’s not the words that keep you there it is simply love. If you really love someone you can’t imagine leaving them to cope alone, and I learnt so much about how it’s really the small things in life that bring true joy that I would do it all again

  6. Thank you. I’m recommending your article to a dear friend who feels alone in caring for his seriously ill partner.

  7. Bill Bohne says:

    Terrific article, thank you for writing it. My wife has Lupus which is a debilitating disease, i knew full well when we got married almost 13 years ago. Over the years there have been many ups and down, many trips to hospitals and specialists ranging from UW hospital in Madison, Mayo clinic in Rochester and Cedar Sinai in LosAngeles all searching for a specialist that could help us. All the while raising her three children from a previous marriage.
    One part of your article that i dearly empathize with you on is vacations. We try to take a trip every year, just the two of us to get away to someplace warm and relax for a week. Usually the pattern is spending the first 2-3 days of vacation in the hotel room while she recuperates from the day of travel. We never plan excursions on our trips because we don’t know what day will be her good day and just do what we can when we can.
    Our kids are now 19,20,21 and doing wonderful in each of their own paths to adulthood so we must have done something right. in my opinion, being a caregiver to a chronically ill wife still has more upsides than downsides. Marrying her was the best decision of my life and i cherish every moment we have together.

    • Cory Huff says:

      Thanks for the comment Bill. I love that you still get away with your wife.

      I’m amazed at all of the discussion that happens online about how to care for children with special needs. Why do you think these kinds of issues aren’t discussed much?

      • Bill Bohne says:

        Hi Cory-
        in my humble opinion, there isn’t much discussion about caring for ill wives because of our superman mentality. We all believe we can take on any obstacle no matter how big, but in reality we are all just men hoping we are doing what is right. Becoming a man is scary, add to it becoming a man who’s partner isn’t well is even scarier. Sometimes facing our own reality is the scariest thing of all, much less reading about another mans perils.

  8. I am 30 and single with active NCS for the past 4 years. I have worried that this means no man will even care to consider me. Your words and love for your wife are comforting and give me hope that maybe I won’t be always be alone because she is sick and she is still loved. I mostly take care of myself, but rely on a few ward friends to help drive me to the store and the doctor appointments. I took care of my mother before she died, too, so I am well aware of how demanding the sick can be and that has perhaps made me not always ask for the help needed. Your point about her just wanting company and comfort is the same way I feel.

  9. hi. my wife and i have been together over 25 years. we have a beautiful daughter of 25, a gorgeous house and a successful business that the three of run. when i first met my wife, i knew she had limitations with her feet, ankles and lower legs. i loved her dearly from day one and have never regretted being part of her life. just before the birth of our only child, she was diagnosed with CMT. over the years her mobility decreased. she began to have more fatigue and difficulty walking. we were finally able to have her fitted for AFO’s, which has helped, but she is still in a lot of pain. she tries so hard all the time and i never tire in doing things around the house, for the business, etc. , when she cannot. i don’t take care of her because i have to. i take care of her because i love her.
    in the past few years though, she has had more and more difficulty dealing with her limitations and the pain and frustration. because of this, she started lashing out at me verbally and became very emotionally abusive on me. i’ve kept things inside and tried to ignore my feelings of depression and worry, but it finally caught up with me in a very negative way.
    i want to be there for her. to be strong and resilient for her. i’ve talked with her finally about my feelings and how i cannot continue on like this. she is being understanding and i am upset that telling her this has upset her also, but i know it was necessary if i was going to be able to be happy, love her and always be there with an open heart for her.
    it’s hard to put it all down here. there is a lot more i would like to discuss.

  10. I appreciate this article. I told my wife this day I write that her discussing her disability brought on by MS (diagnosed in 2003) to me is akin to “emotional abuse.” Now I cannot believe I said that, and I’m backtracking.
    I don’t really believe that. If anything, I’ve been guilty of heaping emotional abuse. I’m trying to get better. It’s just that I hate chronic illness and how our nation’s health care system responds in treating it. We’re both 55, been married for nearly 29 years and have three great children. We also both are being treated for depression – hers stemming from MS, mine brought on partially by past drug use.
    I understand the Superman mentality mentioned above in this thread. As a man, I want to fix my wife and make the MS go away. All she wants is for me to understand it. She says she needs a cheerleader. I question whether I’m up for donning a short skirt and waving pom-poms.
    Further complicating things is her being embroiled in a long administrative fight with our former home state in her application for a disability pension. She was a high school teacher and was working when her MS was in remission in 2006. One of her students assaulted her, shoving her in the back and causing such a severe spinal injury she was forced to retire because she couldn’t stand on her feet for long periods. She applied for the pension in 2007.
    Since then, she’s been denied three times, with the pension trustees ruling that her disability was caused by her pre-existing MS, which we know damn good and well is not true. This state pulled the old insurance company gambit of sending her to “independent” doctors that examine her for a few minutes and opine that nothing’s wrong with her and that she’s able to work in her old job. It is now 2015 and there is no resolution in sight. A nice chunk of change would come her way if her appeal is successful.
    In 2007, meanwhile, I lost a job and was forced to relocate three hours away to find work, renting a room in a local residence while keeping our old home. The whole thing was financially taxing, with my wife relying on disability income (that was later cut off). I commuted on weekends for three years until we finally lost our primary residence to foreclosure and relocated to my current metro area.
    That we have illness and financial stress has enraged me to no end. We can’t do anything about her illness, but we’ve argued over how to handle her disability pension case. I tell her she needs to get aggressive with her lawyer by demanding updates rather than waiting for him to call. I also say she should lobby (in person) the appropriate state officials (that “Superman” mentality kicking in) who can move the case along. She tells me to butt out and let her handle her own business.
    And to add insult to proverbial injury, I was diagnosed with prostate cancer in 2012 and underwent treatment. I’m glad it was caught early, but the whole thing pissed me off.
    I sometimes question whether I would have married had I looked into a crystal ball and could foresee all this stuff happening to us at relatively young ages. Staying together “in sickness and in health” for life is a lot to ask of flawed humans.

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