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.

chronic illnessmarriage

Chronic Illness & Marriage: The Importance of Communication

I am so glad to be introducing you to our first guest writer of the series, Rachel! We were able to meet through the wonderful world of Twitter and I am so glad that our paths were able to cross! She is a fabulous person and a wonderful supporter! Be sure to visit her blog and say hello after reading today’s post!

First off, let me introduce myself. My name is Rachel. I have been married to my wonderful husband for close to four and a half years. I have Crohn’s Disease. I was diagnosed when I was seventeen. I am now twenty-four. My husband and I are also dealing with infertility. You can read my blog at . I mostly blog about infertility, but this post isn’t about my infertility. It is about the importance of healthy communication in my marriage, specifically as it pertains to my chronic illness.
As I said, I was diagnosed at seventeen, so my husband knew what he was getting himself into when he married me. When we first started dating, he researched Crohn’s Disease and read everything he could find about the treatments and the prognosis. I think that him knowing about my illness when we married was definitely a plus because he sort of knew what to expect.
We talked about a lot of things before we got married. We set rules for communication. Communication has always been very important in our relationship. We have a policy in our marriage that we call ‘The No Ugliness Policy.’ It applies to all areas of our marriage. The No Ugliness Policy is an agreement not to say or do anything intentionally hurtful during any disagreement, argument, or discussion. If one of us breaks the policy we apologize immediately. You should never set out to hurt the person that you love. With Crohn’s, like all other areas of our marriage, we listen to each other and we keep it kind and constructive.
My husband was raised in a household where you didn’t go to the doctor unless something was bleeding profusely and/or was life threatening. If it wasn’t going to kill you, you had to suck it up and go on with your day. My husband is still that way. He once went on a business trip while sick with pneumonia! Obviously, with a chronic illness ‘sucking it up’ just doesn’t work all of the time. Sometimes I have to rest to avoid getting sicker. If I am in an active flare I have no choice but to rest. If I start having symptoms of a flare I have to go to the doctor immediately before it gets bad. It took my husband a while to get used to this. We had to talk about the importance of preventative care (rest, stress reduction, regular doctors appointments), we had to weigh the benefits and risks of all of my treatment options, and at times we have had to make decisions that were financially hard on us because of my health.
The secret to communication isn’t really a secret at all. You have to listen to your partner as much as you talk. It sounds simple, but it isn’t. Listening means keeping your mind open to the possibility that you might be wrong. You have to make compromises. For example, my husband’s mother lives very far from us. A few years ago she was going to be just one state over visiting his brother a couple of weeks after I got out of the hospital due to a flare-up. I felt terrible, but my husband doesn’t get to see his mom that often. It would have been selfish of me to not go with him to see his mom. It was hard and I crashed the next day, but I went. My husband has also had to adjust to the fact that when we do something that is physically taxing for me (like a trip or even family get-togethers) I have to crash afterward. Through communication he has learned that chronic pain is exhausting and I can’t just push through it all the time.
My husband is a professional fixer. He is a process improvement engineer to be exact. He has had to learn that no matter how much he wants to, he can’t fix my Crohn’s Disease. I’ve had to learn that he is going to try to fix it for me anyway. It’s his nature. It’s his way of showing that he loves me, but I wouldn’t know that if we didn’t communicate about it. If I didn’t know why he tries so hard to ‘fix’ me I would think that he was angry at me, when he is actually just angry at an illness that he can’t fix for me.
When one spouse has a chronic illness it definitely complicates a marriage, but it doesn’t have to make it worse. It can make it better. Being completely open with my husband about how I’m feeling has at times been uncomfortable for me, but the results have been so worth it. I get mad sometimes that I have to deal with Crohn’s disease while all the other people my age are so healthy. My husband just holds me and lets me cry when I’m mad. He has helped me make important decisions about my treatment when I’ve been too upset to really make the best decision myself. He truly is my partner. I have Crohn’s, but in a way, so does he. I’ve got to say, I sure am glad that I get to face it with an ally who loves me and supports me. I wouldn’t have that if we weren’t so open and honest about our thoughts and feelings.
chronic illness

Sharing Our Spoons Week 4!

“Sharing Our Spoons” will be a weekly link-up where you are able to find support and encouragement to focus on your entire health. Not just physical but all of you. For this link-up you will be able to choose holistic goals to help you achieve optimal health. The five goals include:

  1. Physical: could be weight loss or exercise related or it could be goals like eating more veggies or cutting soda
  2. Mental/Emotional: take a day to be alone, write a letter, paint, etc
  3. Spiritual: start a new devotional book, commit a certain amount of time a day for prayer/meditation
  4. Something fun: Take time to treat yourself – maybe a pedicure or Starbucks (if you don’t typically splurge for specialty coffee)
  5. BONUS: One thing to get you out of your comfort zone a week – try something new, sign up for a class you maybe have been putting off.

Welcome back for another week of Sharing Our Spoons! I hope everyone has had a great week!

The past week I have really been struggling pain-wise. I started a new treatment for my endometriosis but I’m not sure if that is what has caused the increase in pain or if I was headed for a flare anyway from my active weekend and the timing was just a coincidence. I really have had no motivation to do anything but have been in survival-mode more or less and it really stinks. Yesterday, I came straight home from work and went to bed and was asleep before 6. That is NOT normal. My doctor wants to give the new treatment at least six weeks before making a decision so I’m going to try to keep pushing through and see if maybe the pain and bloating will die down once my body gets adjusted!

So here are my initial goals & progress:

    1. Physical: cut back to 1 soda a day. Some people drink coffee, I would like a coke. Then its water. Did much better this week! Going to hang onto this goal one more week to be sure that it becomes a habit!
    2. Mental/Emotional: Start journaling. I need a place where I can write completely unfiltered. Stunk this up. Going to try one more week.
    3. Spiritual: Start a new devotional book – All I Need is Jesus & A Good Pair of Jeans. Didn’t pick it up once. Shame on me 🙁
    4. Something fun: Add one fun piece of jewelry to my collection that is bold & fun!  Of course I rocked this one! 🙂 is seriously a dangerous place! You can find some really expensive pieces but also some great ones that are budget-friendly! I had so much trouble picking one but I went with this turquoise necklace that is 54″ long so it can be worn triple looped like shown in the pic or double looped to wear longer from OnlyPearl! It has shipped & I can’t wait to show it off when it comes in! Here is a sneak peek:
      Turquoise Beaded Necklace
  • BONUS: One thing to get you out of your comfort zone a week. Get into climbing shape though walking and completing the push-up challenge. Because of pain, I haven’t been able to work on this and need to make my bonus something that I can make achievable in the near future so for now, I’m going to change the goal to working on writing a guest article for the American Fertility Association who has asked me to submit a couple articles on my infertility and adoption journey for them to review and possibly feature on their site! Woo-hoo!

How was your week? Be sure to link up! Also, be sure to find Sharing Our Spoons on Facebook for daily support and encouragement! Come back tomorrow for the continuation of the Chronic Illness & Marriage series!