Living With Someone Who Suffers With Chronic Illness

Chronic illness is, unfortunately a part of life. We all know someone who experiences chronic illness in some form, from migraines to MS, from cancer to clots, arthritis to a-fib, lupus to leukemia, chronic pain and illness is all around us.   Maybe you are that someone whose life has been changed because of illness..  My wife is one who suffers from chronic pain in both of her legs due to massive blood clots in 2006.  Those clots busted through her veins, blocked any blood flow and ultimately shattered her veins and nerves, causing a lifetime of poor circulation and unimaginable nerve pain.  I can’t imagine what a day in her world feels like.  She is the world’s greatest mother, loving our son and caring for him despite her own pain.  She serves him sun up to sun down, making his every meal, driving him to his friends house and hauling him to every practice. She is the world’s greatest wife, putting up with my antics and shenanigans, serving her family with dignity honor and grace. It is not an exaggeration to say that she is my hero.  If I could, I would trade places with her in a heart beat, take the pain as my own and send her on her merry way. Such a wish is fantasy.  

It would be foolish to assume that the chronic illness and pain of our loved ones doesn’t impact the rest of the family.  It does.  At the same time, it seems that the impact of the illness on the healthy family members is rarely discussed.  Maybe it’s rarely discussed because it seems so selfish…what do healthy family members who live with those in chronic pain have to complain about?  How can a healthy, pain-free person’s struggle be compared to the struggle of someone who would give anything to find a single day without pain?  It really can’t be.  This blog isn’t intended to compare the struggles between those living with pain and those living with the ones with pain. That comparison is futile and can’t be made. Instead, the blog is written about reality and written for the healthy family member living with the one who suffers from chronic illness.  When Karla became chronically ill, we had to make major adjustments.  When Greyson was diagnosed with leukemia, we had to further make adjustments. I’ve had to learn how to live with someone who can’t do all the things I want to do on vacations and trips.  I’ve had to get used to the idea of staying home or sitting in a hotel room.  

Below are five suggestions for those of you who find yourselves living with people who suffer with major illness or chronic pain.  They are based on our life.  Each suggestions has to have a solid foundation of grace, patience and love.  You must be gracious as you live with someone who has a chronic illness.  You must excercise patience.  And your decisions and actions must come from a position of selfless love.  

5. You Can’t Do What You Want To Do-–Few things are better on a summer vacation than taking your family to a Major League Baseball game (go Royals!).  The next day, you can take your family out to the theme park in town and spend the day riding rides, eating funnel cakes and laughing.  Except, you can’t do what you want to do when you live with someone suffering with chronic illness.  For Karla, simply walking up to our seats at Kaufmann Stadium would be enough to cause her mind-boggling pain.  I know that if we go to a baseball game on Friday, Saturday is a day for recovery.  If we attempted a theme park on Saturday, just the walking alone would be miserable for her. And if it were miserable for her, I don’t want any part of it, even if it would be a blast for me.

When you make plans with your family you have to consider the limitations of the one who suffers.  And you have to know that they HATE this.  So be gracious.  You’d be surprised how much more fun a vacation can be if you slow down and simply enjoy the scenery around you.  Instead of trying to cram as much stuff into a day or a weekend as you can, try to be intentional at each place you go.  Get to the baseball stadium early so you get a good parking spot.  Do some shopping in the team store.  Spend some time in the kids area.  Eat dinner in your seats while watching the home team hero smash a home run from the batters box.  Maximize each day by maximize each stop of your day.   You can’t do everything what you want to do on a vacation, so instead, maximize what you do at each place you go. In other words, slow down and enjoy.  You may not be able to go to the theme park, but you might just find that an ice cream cone at the city park was just as good (and a whole lot cheaper!)

4. You Can’t Make Any Solid Plans– Most couples can begin planning out their weekend earlier in the week.  By the time Friday rolls around they have some time set aside for a date: maybe a night at the movies, maybe a nice dinner.  The challenge with chronic illness is that your plans may get scrapped on Friday afternoon at 3:00. You never know when the flare up is going to occur.  Which means instead of sitting at the movies on a Friday night you might be sitting on your sofa. When that happens, approach it from a position of love and grace.  Trust me, your loved one doesn’t want to be the reason your plans were canceled.  They aren’t having fun sitting on the couch with a pounding headache or laying in bed with excruciating pain.  The gut punch to cancelled plans can be lessened if you know on Monday afternoon that by Friday your plans could change.  When you make plans, just keep in mind that they are “plans” and “plans change.”  If you get to enjoy the night out, praise the Lord!  If something prevents you from going out, pray to the Lord for your loved one and put on your servant’s hat and start serving them.  Just know on the front side, with chronic illness, you can’t make any solid plans. And remember those three words: Grace, patience and love.

3. You Have Major Feelings of Guilt– It just isn’t fair to look over at your loved one and see tears rolling down their face because they are in massive amounts of pain.  The guilt, the “I wish I could take that away”–those feelings are real and intense.  But you can’t take those pains away and you know it. I know it.  So what can you do?  If the loved one who is suffering is your spouse, you can honor your marriage vows.  You love them in sickness and in health.  You serve them with grace, patience and love.  You lend a sympathetic ear.  You offer to help however you can.  You refuse to put any undue guilt or pressure on them.  You simply love them.  If the loved one is a child then you be the best mom or dad the world has ever known. You care for them in the same way your Heavenly Father cares for you.  You serve them with grace, patience and love.  If the loved one is a parent, then you be the best son or daughter the world has ever known. You serve them with grace, patience and love.  Have you noticed the pattern yet?  Serve your loved one with chronic illness with grace, patience and love.

2. You Have to Pull Some Weight– After a long day at the office, nothing sounds better than coming home, kicking off my shoes and sitting in my recliner and doing nothing. Just mindlessly sitting in my recliner, doing nothing.  But there are days when Karla’s pain is too much and the responsibility is too great and my idea of doing nothing just isn’t possible. Though she rarely asks for help, I can see when she needs it.  Occasionally her bad pain days and my long days at the office fall on the same day– Translation: I need to pull some weight.  I need to cook dinner (or go buy dinner).  I need to take the lead in getting Mason ready for bed.  I need to make sure all the “things” are done.  I have to pull the weight, even if I’m exhausted and don’t want to, because she is in too much pain and she can’t.  And when I do, I need to do so with grace, patience and love.

1. You Have to Pinch Pennies– Before Karla became disabled, we both had great paying jobs.  She was a nurse and I drove a truck.  Between 2003-2007 we made more money than we will likely ever make again.  But we had no budget, no parameters for how we would spend that money and so we were broke.  Always broke.  In 2006 Karla developed massive blood clots in her legs.  In 2007 we moved to Kansas City for me to attend Bible College and Seminary.  Our income was cut in half.  In 2008, the pain became too much for Karla, so she became unable to work. Our income was cut again.  I began working as much as I could.  For a short season I worked 20 hours a day and somehow managed to complete college courses online.  Once that season ended I maintained two jobs and an 18 hour course load in college.  Between my two jobs our income was roughly 20% what it was two years earlier.  Translation:  We had to pinch pennies. Even today, almost 20 years later, we make less than we did when Karla was working as a nurse and I was driving a truck.  But, because we learned how to pinch pennies and live within a budget, the Lord has provided us with more flexibility today than ever before. The point is this, when you live with someone who has a chronic illness, you will have to learn to pinch pennies.  They will have to miss more days of work than usual.  And sometimes, their illness will cause a temporary or permanent disability. Learn how to budget your money.  Learn how to live below your means.  Learn how to turn one dollar into two. Do all you can to avoid having fights over money.  Those fights are fruitless and unnecessary if you learn how to handle your money and pinch your pennies.

At the end of the day, I could add another 500 real glimpses into the life of pain on the other side.  But the truth is, every glimpse must have a foundation of three basic principles: grace, patience and love.  Apart from these three, you’ll end up frustrated, disappointed and angry. But with these, you’ll be able to love your loved one like Jesus loves you.  So, love like Jesus. Your relationship will be the better for it.  And so will you.