Marriage in the World of the Chronically Ill!

PART 1:  (I'm beginning a small series on Marriage in the World of the Chronically Ill)

One thing I've been asked over and over during my journey is how has my marriage been able to continue to thrive through all we've been through.  It's not a cut and dry answer........but I will say my marriage was and still is a priority.  No two marriages are the same.  I would assume the dynamics prior to illness, would greatly effect the post illness marriage.  However, having an earth shattering diagnosis, illness, changes in family dynamics, extreme physical and mental stress, disappointment, and so much more can rock any marriage into the seas of turmoil.  I'm only sharing from my point of view and the steps we took TOGETHER to keep our marriage rock solid during immense life changes.
Hopefully my story can help someone else in a similar situation whether their marriage is forever changed by chronic illness or not.

As you have followed in my writings, my precious husband and I were inseparable prior to my illness.  We were two peas in a pod, made for each other, soul-mates, and deeply in love.  I'm pretty sure that has played a big part in our success.  However, our world got shaken and turned upside down (and that is putting it mildly).  We were faced with the devastating reality that our 'one day'---'our dreams'---'our future'---and 'our plans' would be nothing as we had imagined them.  They all went up in a puff of smoke.  I became sick.  I WAS sick.  I was no longer the same person, and in turn my husband was also not the same.  Our lives were changed DRAMATICALLY.

To add insult to injury, I was now not only a physical dependent, but my previous responsibilities had to fall to someone else...and mostly to my mate.  The immense pressure, new responsibilities, fear, overwhelming work load, double duty, caregiving, and uncertainty also took a heavy burden on my husband.  We now had 2 completely new people in this marriage.  The first was extremely sick, weak, frustrated, scared, and completely disabled.  The second was overwhelmed, over worked, saddened, and carrying the weight of the world.  "Hello:  Mrs. Sickly let me introduce you to Mr. exhausted!"

This was stress on overdrive.  Stress can devastate and destroy even a good marriage.  We had both lost so much, but we were NOT going to lose our marriage or friendship.   We didn't want to just survive together...we wanted to THRIVE!  The work ahead was deliberate.  It didn't just happen, we chose to keep 'us' strong and keep our marriage in the picture.  It could have been easy to just focus on getting Melanie better hoping the rest would fall in place...and some days that's what we had to do.  But our 'love for the ages' was going to stay a priority, even when our world was crashing down around us.

1) 'WE' are enough
After the dust settled, the disappointment, frustration, fear, and exhaustion set in for us both.  I remember how great the burden of disappointment was for David.  This was one of the toughest things we had to work through.  As a 'former' planner, we had our whole lives and future mapped out.  Our new life was not only unappealing but could never fit into our perfect little box.  It took us both a long time to move past this aspect.  One day I lifted my head slightly off of my pillow, so sick it was about all I could do, and I said:  "We may not have Fiji, but we have a love for the ages, and that is enough for me."  It was at that moment, we began to put what we thought life would be like on the back burner and be excited about what we did have.......we had each other and that was enough!

I'm not saying that magically all our disappointment faded into the night.  It didn't, and it hasn't.  But we would come up with our own new future, together.  To the previous Melanie and David, the new prospect of our future wouldn't look very appealing at first.  We'd have to wade through the muck of disappointment before we could find the prize at the end.  I could elaborate quite a bit on this topic, but I'll save it for another post.  Our first step in keeping our marriage strong was accepting the new 'future' and learning that 'WE' are enough.

2) Changing the Conversation
Have you ever had the horrible, unrelenting stomach flu?  I'm talking about the can't keep anything down, can't get out of bed, can't even talk kind of stomach bug.  Can you picture those 1-3 days or absolute anguish?  Let me guess, you probably didn't make any life decisions, carry on riveting conversation, or show up anywhere on your A game!  For 2.5 years that was my life most days.  I was a real treat to talk to....yeah, no!  I hurt, I ached, I was very sick, I couldn't get out of bed.....that was my reality.  I didn't have very much to say. (totally not like me, by the way)  I wanted someone to know I was in pain, how much I was hurting, and how much I was 'sucking' up all the time.  There wasn't much more for me to say.  I woke up miserable, was confined to bed, and finished out the evening in bed.  The only thing to talk about was to what degree did I suffer today?

After a few months, this took a tole on our alone time.  We needed to find a way to communicate and be together that didn't revolve around me being sick.  That was much harder than it seems.  Every time we had an opportunity to have a date night, one on one conversation, or just hanging it out, it always had to be in my bed.  I couldn't leave, eat out, or do anything.  We had to reinvent ourselves as a couple.

Changing the conversation.......easier said than done.  It wouldn't be fair for me not to be able to share how I was feeling or what I had done today, because it was my sole existence.  I needed his audience, too.  However, it wasn't fair for everyday and every conversation to remind him that his wife was 'sick'.  This was a tough process.  Because while he needed to shut it out for a day or 2, I was still stuck living it.  My pain and agony didn't cease because he needed his wife to be his friend again.  We spent months talking with a grief counselor, and this was one of the challenges we addressed.  She helped us find a great balance between the two.  David had to learn to 'hear and listen' to what his best friend had to deal with everyday.  He really worked hard at this!!!  He had to bring compassion, empathy, and most importantly, a desire to listen.  On the other hand, I had to make intentional time to find things to talk about that had nothing to do with illness.  This was also difficult for me at first.  I remember flipping through the channels one day to find some show to chat about.  Slowly, the two of us equally met a very important need of the other.  Now, it's amazingly easy for us.  We are both very calculated in our attempts to meet the needs of conversation.


3.  Intimacy

Let me keep this small entry PG!  This is a wonderful topic that I would love to write more about, and frankly, I feel quite comfortable sharing, but will be brief for today since my teenagers may or may not stumble on my blog.    Like any good marriage, physical intimacy is a must and must be a priority, even in the face of illness.  Yes, I said that..... 'shock and awe'.  One of the most important things my husband and I have done during my illness journey is keep the candle burning.  I won't say there were not weeks when my husband might have been afraid to touch me or the doctors told us to refrain for medical purposes, but that's where creativity had to come into play.  Would love to tip my playbook here, but I can feel my husband blushing from the other room!  Creativity with chronic illness is a big key!***

When I became ill,  my husband's needs didn't magically disappeared.  And now that I was sick, any physical activity was a challenge.  Bringing this together, was the trick.  I was very much aware of his needs, and honestly, nothing helps take your mind off of your own predicament like trying to meet the needs of others (as you are able).  I've told many people who are sick that if you try, even in a small effort, to help those around you, you will find your outlook on life can dramatically be altered.  This same principal can be applied to physical intimacy in marriage and chronic illness.  Becoming selfless isn't a popular notion these days, but one that needs to be embraced...especially in this area.  Chronic illness and great sex CAN coexist.

Best advice I could give someone in the similar situation is....make it a priority, make time, do as much as possible, any effort is an effort, be extra creative, talk about it openly with your spouse, try--try--again, keep trying, and did I mention....KEEP TRYING!  Gosh, I could write a whole book here on this one topic!  Hmmmm, maybe I just might!

***This is the end of part 1.  I'll be writing more on this topic over the next few months****