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Chronic Illness & Marriage

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Chronic Illness & Marriage: Dealing With Change Part II

This is a continuation of our talk about dealing with the changes in our lives that occur as a part of living with chronic illness and how it affects our relationships. I am so thankful to have Sarah back with us as she shares her thoughts! Click here to read Part I of this post!

Another common issue comes from us, the ones with the illness. If you have had a chronic illness for any length of time then you are familiar with the  statement “I’m fine.”  There are many reasons we use this statement, very rarely is it the truth. Sometimes we use it when a stranger asks how we are and we don’t want to say we’re sick, cause strangers don’t really want to hear the truth anyways. But there are a lot of other times that it is used, for example, when you don’t want someone to be giving you “advice”  on how to get well, when we don’t want someone to feel pity for us, so people don’t feel obligated to take care of us, when we’ve had enough of it ourselves and just don’t want to talk about it, when we don’t want someone to worry about us and for those of us with the invisible illnesses, when you are talking to someone who doesn’t believe that you are really sick because “You don’t look sick.” to them.

We spend so much time denying our true feelings for so many reasons, even if, sometimes it is to spare someone we love some hurt. Sometimes we get too good at being “fine”. We are good enough that our spouses don’t really notice the small changes taking place within us. When someone is around we make sure that we appear “fine” and then suffer in private. When this happens, the changes that have actually been slowly taking place, seem to come out of the blue to our partners. All they know is that you’ve been “fine” for the longest time. But now there has been some major shift in your personality, emotions or physically and they don’t understand where it came from. Because you were hiding how you feel, you’ve blindsided them. And people can only take being blindsided, on a regular basis, for so long.

It’s really hard for people who don’t feel what we feel to understand some of the things that change in us. Like maybe we aren’t as much fun anymore or we get anxious and worry about everything when we used to be much more easy going. Sometimes, so many changes have taken place, we feel like we have just grown apart from each other. When a change forces its way on us, and it is obvious that we have gotten worse, you sometimes get the reaction “But he/she used to be so strong. I don’t know what happened to them”. Well, we got tired. When you don’t experience the change, step by step, you have a hard time believing that it could really happen. It can seem like we’re letting something get the best of us. Or maybe it seems like we have given up. And sometimes it can even seem like there is no way someone could have that many illnesses (they must be a hypochondriac, right?).

I am going to take a slight detour here into my personal experience, I hope you don’t mind. I am going to give a couple of examples from my recently failed marriage that show exactly what I have been explaining about the illness changing us and thus making changes in our marriages. Eight months ago I learned that my marriage of 7.5 years came to an abrupt halt. Had I known there were frustrations in the marriage? Yes. Had I realized just how deep those frustrations went? No. And I will admit that we had terrible communication between us. Which is kind of strange because I normally have such good communication with people, I think it was more that our *styles* of communication didn’t mesh very well and thus a lot of things fell through the cracks. I do not blame myself for the failure, nor do I blame him for the failure. It really is never one persons fault. But after we had been separated for a few months he was able to give me some more detailed explanations, as to some of the things that had changed between us, that he believed led, in a large part, to the deterioration of our relationship. And as I read these explanations it suddenly became clear that there WAS blame to be laid. And it was to be laid on chronic illness, more specifically, the changes caused by chronic illness.

Without giving direct quotes here are some examples that directly relate to some of what I have been explaining so far. I was concerned that maybe he had never been in love with me so this was one answer I pursued. And it was explained to me that yes, of course he had been in love with me. He had been in love with the “happy me”, the one that could do anything , the one who could be spontaneous, the one who could make plans and look forward to those plans. The “me” I had become in those 7.5 years? I was the one who seemed scared and trapped, who hid in her bedroom and only came out at night, the one who could no longer plan anything more than a day in advance and even then a final OK was required a couple of hours before. The one who was physically “touch and go”. Sometimes I would be ok (a good day) and, once again, be able to do anything but then other times (more often than not) just a touch could set me off.

Being forced to look at these changes that had taken place, I could pinpoint certain parts where my illness had gotten worse, or a new one had cropped up, and I had allowed those changes to change the very person that I was. I have worked on some of those changes that I do have control over, but it is a daily struggle. I try not to get as bad I was a few months ago but I also know that I may not be able to control that forever and I have to accept that these illnesses ARE going to change me and what I really have to work on is accepting the new person I will become. And just because every cloud needs to have a silver lining, I will share that my ex and I are still very good friends. We’ve accepted that our marriage had deteriorated beyond repair but that our friendship hadn’t and we’ve decided to keep working at that friendship instead of cutting each other out of our lives. Because like I said before, neither one of us holds the blame on this one, it was circumstances that were out of our control, and we’ve accepted that.

It’s extra hard for couples who meet healthy and then one of them falls chronically ill. They have a hard time not thinking “but they used to be so active or healthy” when they look at you. The job of overcoming and staying together is extra hard on them. But they do have the fact that they are experiencing the changes at the same time which sometimes helps people grow together more than when one person has more experience with the illness already. It’s new to both of them so they learn together.

But even if the chronic illness is present before you decide to get married. You can talk about it in depth, you can research everything out there that there is to know. You will think that you’ve taken all the right steps and that you are prepared to weather the storm and deal with it for as long as you need to. But no one, not even those of us with the illness, is ready for all the unknown/unforeseen changes that will take place within each of us and within the couple as a whole over a lifetime. Sometimes they will say they understand (few rarely do) and that they love you and will love you no matter what, forever.

Well when you’re sick or living with the sick, forever can seem like a very long time. Too long for some. And some just realize that they are not as good at coping as they thought they were. When the information you read said the illness wasn’t progressive yet you see your spouse steadily getting worse, you will not understand, you will question everything you’ve read and you’ll be angry. Not at anyone in particular, just angry. It’s these little changes, the unexpected ones, the ones that creep in and suddenly the person you fell in love with doesn’t “seem like the same person anymore.”

You can have the best communication skills ever, but when the sickness vastly out numbers the health, sometimes those skills break down. Sometimes we may feel confident that we know what we are getting into and that we can handle it. Perhaps it is better to just go in saying, I don’t understand it all but I promise we will grow through these changes together, and we will handle it together. And sometimes, with all our love and best intentions, we just aren’t able to handle it together. There is no one to lay fault with, really. It’s just another change, that we weren’t expecting, that we have to learn to deal with.

If you and your partner are having problems it may not be any of what I just mentioned or one of them might be glaring out at you or maybe a combination of a few or all of them is standing out. But that is the reason I decided to write about these changes. Because it’s an area that we have to consider, we need to know it’s there and that perhaps it is part of the problem. The more knowledge that you have the better prepared you are. No one will ever have all the answers, but we can certainly try to.

There are many, many changes that people, healthy or ill, with go through every day, these are just some of them. I have experienced all of them in some fashion through different relationships and parts of my life. The best tool to help conquer the change monster is to get it out into the open. Talk about what is going on freely, have great open and honest communication with your family, friends and partners. Be frank with each other about whether or not you think you (either of you) can handle this, or is it too much? Open, honest and frequent communication may not save all relationships, but it’s a really good place for you to start.

Remember before I mentioned something about clouds and silver linings? Well, there is this one scenario I haven’t mentioned yet, and I saved it for last on purpose. I didn’t want it to go first because I wanted you to read about all the issues, and what happens more commonly, because the more you know and understand the more aware of what is going on between you and your spouse. You will also be more aware of whether any of those nasty little problematic changes are happening to you.
This last part is about a group of people, who seem to be few and far between to us chronic folk. These are people who love you and CAN handle your illnesses. Whether it is because they have experienced it themselves, or through a relative, perhaps they work in healthcare, maybe they are just really empathic
and understanding. Whatever the reason, these people are like gold. If you meet one, and you are lucky enough to fall in love with each other, then you make sure you hang on to them. Because that, that IS the fairytale relationship, that we all dream about. When you find a partner that truly believes, “in
the good times and the bad, for richer or poorer, in sickness and in health, for as long as you both shall live”, and then experiences some of all of those with you, and is still around, well that is what I consider “the one”. The one who is always at your bedside because they just want to spend time with you, however they can. They want to help you but know sometimes they can’t and they don’t hold that against themselves. They do everything they can for you. And in the end, they are strong enough, not to hold your sickness against you. And they are there for you through it all, right by your side. And they will
never leave you alone.

If only these people could teach others to love unconditionally like that. Love should be from our hearts, not our heads. And when we do meet these ones that “truly get it” and can cope, well these ones…they are the keepers, so make sure you hang on to them darnit! Because if you don’t…one of us
will! 😉

Thank you for reading!

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 www.rachelsgettingthere.com . 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.

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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