Marriage Advice From A Man
29 Jan
My wife has had a chronic illness for about 13 years. We’ve been married for about five and a half. The whole time I’ve known her she has suffered from this debilitating condition, called Neurocardiogenic Syncope, that causes her to pass out or become very weak several times each day.
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 always along the lines of, “Wow, that’s really brave.” As anyone who has had a sick spouse knows, it’s not really a bravery thing, it’s a love thing.
Marriage and being a Good Husband is sometimes difficult. 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 on the dates that we plan. The trips we plan can be cut short or changed when she’s unable to leave the hotel room.
That’s okay with me, though. We’ve become flexible and more relaxed. Some of our friends have these super vacations where every single moment is planned and scheduled so that they can see as much as possible in as short a time as possible. We never do that. Usually when we go somewhere on a date or a vacation, we have a loose plan that we fill in after we get there. Sometimes they tell us they wish that they were more relaxed on their vacations.
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. The protective male instinct that I have tells me that I’ve done something wrong because my wife is suffering and I’m not.
Like most 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 haven’t noticed that all she needs is for me to sit with her and put my arms around 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 a great deal and love spending time with her. 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 time to care for someone who’s ill. Scheduling time for activities that I enjoy, that rejuvenate my spirit, that give me the energy required to go back to my spouse and care for them. It took me time to recognize that this is not selfishness, but is, in fact, the opposite of selfish. We can be at our best caring for others only when we first care for our own basic needs.
Communication. Sometimes those who are very ill 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, and she had to learn that when I do take my space that I am able to come back with more care for her.
Surrounding myself with supportive people. I recognize that I could do better at this, but there aren’t too many people with my wife’s condition. Cancer patients and other illnesses that are more common have lots of support groups. It’s important to surround yourself with supportive people who understand what you’re going through. You can ask them questions and get a lot of validation for those efforts that you go through every day.
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 lots of different doctors, and participated in online forums for those who had this same heart condition.
Now, I wasn’t as balanced as this post makes me seem when I first began to understand my wife’s health. It took a lot of talking, prayer, education, and trial and error for us to come to a happy balance in our life. I expect that will continue to happen as we go through life and her health condition evolves.
Do you have a spouse with a chronic health condition? I’d love to hear your experiences and how you have managed to come to terms with the situation. Also, what challenges do you have and how are you meeting those challenges?
11 Responses for "Caring for A Chronically Ill Spouse"
[...] time readers have read about my wife’s chronic health condition before. Over the last year, we had done quite a bit of searching and discovered some new research [...]
It’s nice to know that my hubby isn’t the only one who wishes he could make his wife healthy. He also married me knowing I wasn’t perfect…
[...] all of you will have to live with having a spouse who is chronically ill, but you will have to deal with illness, injury, and emotional distress. You should care about how [...]
Thank you sooooooo very much! I am diabetic (40 years now), handicapped, severe chronic pain sufferer (from accident), arthritis, Neuropathy on both feet and partial on left hand and now all those problems have gotten worse since the birth of our son in 2006. He, my husband, too knew of my health problems before we got married. In the beginning he was doing great, but now I feel that he does not really listen to me anymore when I try to talk to him, or that he pushes too hard on trying to “take care” of me. I think the biggest problem are my feelings in general. instead of a hug and kind words I get a “scolding” or a distant “oh your going to be just fine”. I try to give helpful hints and advice I’ve received to make things better between us and I feel like it is in one ear and out the other. Depression is high on the list for chronically ill patients. I’m sure you know that too. I’m trying so hard to keep my head on straight and hoping I can get his back on! I will be forwarding your advice and I pray that it hits home for him. Many people think that we are stupid for having a baby with all these problems knowing full well that my issues could/would worsen with a pregnancy. But we did it and have no regrets. Sometimes I look at our son and know that mommy and daddy’s relationship will survive. We just need to find the correct band-aids and ace bandages to keep it together That’s all!! I know that your words will definitely be a start in the right direction!!!! Thanks again
I have learned I have to spend time for myself. My husband is able to do somethings, but mostly tired out so I must do the physical work. I have friends that help me cope too.
12/20/09
Why?
How blessed are we
Who live our lives
Free of pain and suffering.
Father of Life
I pray each day
You take her pain away
And wonder,
Why, oh God, must she suffer so?
She, the one You joined to me.
My partner in life.
Her agony
Is hard for me to bear.
But the pain I feel for her,
Is nothing when compared
To her suffering.
Why, oh God, must she suffer so?
In my life
I have never known anyone
That has suffered
So much
For so long.
Job has nothing on her.
Her strength to endure…
Incredible.
Why, oh God, must she suffer so?
Decades, three, have come and gone
Since her suffering began.
Countless prayers for healing
Have returned empty.
I wonder, are You deaf?
Have You no mercy?
Help me understand,
Why, oh God, must she suffer so?
Her temper,
Raw and inflamed,
Like her swollen limbs,
Lashes out at those she loves.
Then, in response,
She collapses
In despair.
Why, oh God, must she suffer so?
You know what it’s like,
At night,
While she sleeps,
To hear her pain filled sighs,
With every breath.
Do You hear me crying?
So many times I’ve cried,
“Why, oh God, must she suffer so?”
Poppy potions
And toxic concoctions
To numb the pain
Have taken their toll
On her
And us all.
She’s not the same,
You know…..
Nor am I.
Very perceptive blog post from Cory H. I’d like to suggest for husbands, wives or partners of a person with chronic illness and/or disability, to take time for themselves by checking out the Well Spouse Association, and its online forum, here: http://wellspouse.org/forums
My wife has lupus and rheumatoid arthritis. I was informed of this before I got involved, but she was in remission at the time and I had NO idea what it really meant. Between us we have 5 daughters and it feels like there is never time for a break. Our kids are in school all day and I’m in school. She stays home all day and then jumps on me when I return. I know she is hurting and angry and frustrated with her situation, but it is SOOOOOOO hard not to tell her to go stuff it when she demands more of me than I can manage.
One of her girls has Asberger’s syndrome and we suspect that my wife also has it. Fun.
I won’t leave her, but it feels like abuse many days. She is in so much distress that she doesn’t she that I am also suffering. When I tell her how I feel she always compares it to her own struggles. How the hell can I compete with that!
Why can’t I have a night out without her? She tells me that she wants me to go out with her instead, but those night get cancelled often because of her illness.
Thank you for reading to my rant. I don’t really expect a solution.
-M
Hi everyone,
i’m not sure if i’m doing this right but here goes,
i care for my husband who is 49 i am 43 he has emphysema, pulmonary fibrosis and this year had most of his right lung removed, he is on oxygen 24/7. he has had anger issues and gets moody for as long as i’ve known him but these last few months his verbal abuse is really bad, me and the kids have been there for him i have cared for him loved him supported him i put everything into making sure he was ok but he couldn’t see what he has and i become his target and was to blame for everything, he kept walking around everyday saying i wanted him dead and he should have died in surgery it would be better than living with me, he made my birthday horrible and i was in tears all day. he then started saying i will get my wish and a few days later he took heaps of pills and ended up in hospital, he is now on mood stabilizers and is back at home, he isn’t yelling at me but things are no better he wont talk about why he did what he did and i’m finding it hard to forgive him for all the abuse… there has been no love life in our relationship for over a year and a half, it just feels like i am his nurse and nothing more…
i suffer from panic attacks and his bad moods make them worse, he can’t see that we are all affected by his illness he thinks its just him going through it all…
i don’t know what to do
Sharon, I would say your poor husband is in the anger stage of grief. I’m not a licensed psychologist, but it seems fairly obvious to me.
He’s very ill, close to dying, and he just lost a major portion of his body - he’s grieving his age and lost vigor. That kind of thing could make anyone angry.
My recommendation would be to seek professional grief counseling. If your husband won’t go, then do it yourself to find out how you can make your life better.
Sharon,
I’m commenting from the other side. :o) I was recently diagnosed with yet another problem (Lupus). Prior to that I was very difficult to live with.
For me it was a combination of pain and anger. I too wanted to die, and said something very similar to my husband. “You and the kids will get the money, have a nice trip wherever you three go! It won’t matter to me, I’ll be dead!”.
Yes the verbal abuse was bad and the 2 y.o. is at a point now where he hears us raise our voice in ANY discussion and immediately tells us to stop. Physical abuse reared it’s ugly head too. I thank God that getting a new medication helped the situation immensely! My husband never stopped saying I love you. Believe it or not THAT helped me when the fury was at it’s worse.
I am diabetic, physically handicapped, suffer from chronic pain and have not felt normal in over 10 years. There is no excuse for my actions, none, but our faith has helped as well as our ability to forgive.
Have faith Sharon. Amazing but true.
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