chronic illnessmarriage

Chronic Illness & Marriage: Dealing with Change

I am so glad to be introducing you to today’s guest writer, Sarah (who also goes by dragon) as she tackles a tough topic in addressing the impact of chronic illness on marriage. As much as I wish every post could be butterflies and rainbows, we all know that is not always reality. Chronic illness is hard. Marriage is hard. Combining the two can open the door for frustration on both parties, both the sick and the healthy. Today will be part 1 as we discuss how the constant change in life with an illness can affect marriage.

We, as human beings, are constantly changing. Our lives are perpetually in a state of flux as we evolve to various situations and surroundings. That is one of the lessons we learn from childhood to our teen years and then we attempt to perfect it as we move through adulthood. I don’t think anyone has ever “perfected” it though.

There are many different possibilities for change to manifest itself within us. It can creep slowly along at a comfortable pace. It can blindside us like a ton of bricks if we aren’t paying attention. Sometimes we need someone to help or guide us through a particularly difficult change. Sometimes we’ll just wake up one morning and “feel” as though something major has suddenly changed within us. Then, almost just as “suddenly”, we realize that we are perfectly ok with it, that our unconscious had been silently preparing us for this all along. Those are some of the most common, or “normal”, situations of change we could expect to come across throughout our lives.

Now those of us with chronic illness (be it visible or invisible) we have some more types of changes to that list. There is how our bodies, physically, are constantly changing due to whatever illness is harming them. Our personalities, those tend to change quite often and can indirectly affect to how we feel physically. If you have been chronically ill for some time then dealing with your emotional and physical changes is probably somewhat second nature to you. Others, at the beginning of their journey with chronic illness, are just trying to pick their way along the path and learn as much as they can as they go along. Both, however, at some point come to terms with the fact that they will always have these additional physical and mental changes, changes NOT limitations, shaping their lives due to an illness that, at the moment, has no cure. Once you accept this, the road is a little bit easier (note: I said “little bit”). Given enough time, which you have as it’s chronic and incurable (at the moment – can’t block out all hope!), most will find their way to that “second nature place” . That doesn’t mean we’re happy about it, we’re just being realistic.

Before I go on I would like to share a couple of lines on the topic of whether our illnesses are “progressive” or not. Depending on the illness, there are sometimes schools of thought that say the illnesses are not progressive. This is mainly because they often seem to be in a state of limbo as more information is being uncovered or because they do not end in death. I disagree on this thought, regardless of the illness in question, and here’s why. Even if the symptoms don’t have constant, steady increases to medically warrant being called “progressive” I still believe that they absolutely are. As our bodies age and wear down from the constant barrage of our symptoms, not to mention everything else that is contagious around us, we tend to get worse. We get increased symptoms, new symptoms and sometimes even develop new illnesses due to the constant pressure, on our increasingly worn out bodies, just to function. As well, our emotional state is always changing depending on how our bodies feel that day or week, to me this is also a symptom of our illness and since it can continually get worse, even to the point of severe depression, this fits the criteria for our illnesses to be called “progressive”.

So how does all of this affect our marriages?

As these things start to change inside us they also change our outside. The person with the illness is feeling, directly, what causes the changes. They are constantly learning from them, like how you have to change the angle you sit at now because a pain in your back is out of control. Every time we try to sit in our “normal” position a pain flares up inside us, an instant reminder of something that needs to change. Can you guess what is very similar to this? A training device used on dogs called a shock collar. It aids in conditioning certain unwanted behaviors, like excess barking, out of dogs. Well our illnesses do the same thing to us. Whatever is the current “worst problem” is conditioning our minds and bodies to react the way it wants us to. And that changes us. And it doesn’t take much to change us because we are the ones, the only ones, receiving the constant “correction”. And because it’s harmful or painful we learn to accommodate it very quickly.

But how does this affect our spouses?

They don’t feel this correction. When they are with us they see us in pain every time we receive the correction. They don’t want us to be in pain and wish they could help. But they don’t feel the pain when we happen to lean the wrong way or take a breath too deep. They aren’t receiving the constant corrections that we are. So they aren’t continually growing with it like we are. They aren’t with us 24/7, they don’t feel our constant pain or see our constant wincing. Whether you both work or just your spouse works they aren’t with us at least 40 hours a week. So when we are getting enough daily corrections to force a permanent change in us in a matter of weeks or month, they haven’t been getting those corrections so they are not at the same stage we are. They lag behind. So, sometimes it’s like, one day they come home from work and suddenly there is a visible change in you, it could be physical or emotional but it’s there and they don’t know how or why it happened. Nor do they know how they should react to it. And they will see this happen over and over again and they don’t understand why, they can’t. And, even with some of the best communication in the whole world or with a specialist who is trained to help couples deal with this, for some people this chasm just gets too big and they can’t find a way to bridge it.

Sometimes they do understand what is happening to us. They know every time they see one little change starting to take place, that we are in pain and hurting. Some people can’t watch someone they love be in pain all the time. They love us, so they want to fix us. Men especially have a very hard time understanding that they just can’t fix us, no matter how badly they want to. It’s hard to be in the room with a loved one, in obvious pain that you can’t fix, it breaks our hearts. Unfortunately, a heart can only be continuously broken so many times before the pieces are too small to pick up. Sometimes the emotional pain, from seeing us in pain, and not being able to help us, just tears them apart. Some people just don’t have the right kind of strong, and there is nothing wrong with that, to live that way day in and day out indefinitely. So to keep their sanity, or rebuild themselves, they have to move on.

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6 comments on “Chronic Illness & Marriage: Dealing with Change

  1. Joanna says:

    What a moving post. I am only just now coming to terms with all that my illnesses do to my marriage. This is a difficult topic for a lot of people because it is so deeply personal. Thank you very much for sharing.

  2. Jessica says:

    Thank you for this. As someone who has a medically-defined “progressive” illness (although I agree with your thoughts on the subject as well), I can honestly say that I was much, much healthier when I got married five years ago. The changes have been quite an adjustment. I don’t think my husband ever expected that he’d have to fasten buttons for me when my hand muscles atrophied to the point that I could not. Likewise, I don’t think he expected that he’d have to speak for me when my esophageal muscles weakened. It’s been a tough road – I don’t think he minds, truly, but I myself need to “just get over” some of the guilt I feel.

  3. Annabelle says:

    It’s difficult stuff. I myself am not married, but I struggle with dating through these kinds of changes, and it can be challenging. Thanks for the post.

  4. Dragon says:

    Thanks for the comments. Can’t wait for Part 2 to go up. I think it goes even deeper and shares some of my recent personal experience as well.

  5. estela says:

    Here is a website that gives you great tips for good health, take a look at it, I’m sure you will find it interesting.
    nutrition related to fibromyalgia and other autoimmune diseases

  6. […] Illness & Marriage: Dealing With Change Part II June 14, 2012 By Jamee Leave a Comment Click here to read Part I of this […]


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