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
Thank you for reading!