Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Can Marriage Survive Remission?

Can marriage survive disability?  Perhaps the real question should be… can marriage survive remission?  Staying happily married is not easy.  Marriages where one person is disabled share all of the same problems that our nondisabled counterparts deal with. All marriages deal with financial problems, most marriages deal with occasional illness or injury.  And most marriages deal with the occasional sexual issue that needs to be addressed.  Sometimes people just grow apart. But when one person in the marriage is disabled, all of these problems are magnified times 10.

I really think we have to work twice as hard to keep our marriages from running off into the ditch. It’s no one’s fault really, the game keeps changing. When the story begins you are both working, you are both bringing in an income, you are both on equal footing, you are partners in every sense of the word. Then, without warning, things start to shift and you get sicker and sicker. You start to call out sick, then you are in trouble for calling out sick.  Then you get sicker due to the stress of getting in trouble for calling out sick, then you are just out!  Many of us didn’t realize that it was our last day at work. You live in the delusion that in a week or two you will feel better and make it back to work like every other time. Even when your doctor puts you out on disability for six months, you still feel as if this is a temporary setback. While you are busy resting (or plotting your return to work), your spouse springis into action, they are a whirlwind. Now they are taking on every chore that was yours in addition to everything that they already did.    And as if that weren’t enough, they are now driving you to and from doctors visits, helping you out of the shower, washing your hair, washing your clothes, and watching you sleep, and sleep, and sleep.  They pay the bills, make the calls, parent the kids, they do it all.  They are so busy and exhausted that they have little time to acknowledge just how much this sucks.

And for this time, you must (and do), give over full control to your partner.  Not only do you do this willingly, you are grateful!  You are grateful to have such a wonderful person in your life and in your corner.  You are overcome with emotion, what could you have done to deserve such a wonderful mate?  You are so flipping sick that you are really just in awe that they didn’t leave for milk one day and just not come back!  They are strong.  They are your angel, your Knight In Shining Armour… and this is good… for now…

With any luck some month in the near future you find a treatment that finally works for you and very slowly, very, very slowly, progress is made. One day you realize you are able to shower for yourself without assistance. A few weeks later you prepare a meal and then promptly collapse. It will be weeks before you can try that again... But again slowly, slowly, the progress moves forward, if even at a snail’s pace. Almost imperceptible to the naked eye.  Then one day you find yourself starting a load of wash and actually folding it! As you find your sea legs, you overdo it almost daily. Wipe the counters… sit and rest, put the dishes away… sit and rest.  The word “sex” still does not register with you.  It has a familiar ring to it…  but you can’t quite place it… Spanish II perhaps?   You reacquaint yourself with the vacuum as beads of sweat roll down your neck.  You sit for a half an hour between rooms and then sit for an hour-long rest in the nearest chair when you are done. To think vacuuming has become an all-day event...  ah, but still, you can do it!  V for Victory!!!  A few months later you are no longer sleeping 12 and 13 hours a day, you now requiring a mere 11!  Sex? you begin to have fond memories… 

Fast forward a few more months, and the sleep you require is down to 10 hours. The measures of success are wondrous! You even join your spouse on a short walk with the dog, making it a whole three houses! Over the next two months of warm weather you find your way day by day, to the fourth house, the fifth house, and the sixth.  Hours of sleep?  Down to 9!  Oh Joyous Rapture!  There are setbacks along the way, some so alarming that your spouse fears the worst, that all of your progress has been flushed down the bowl:  the day you were foolish enough to weed the front garden for a half hour in the setting evening sun, collapsing on the living room couch alone, unable to move, no one around for over an hour, your spouse finds you dehydrated, pulse racing, clammy…  even you wonder if this is it…  headlong into a flare-up…  what have I done?  Oh Dear God, please, Noooo!  But luck is on your side.  Two liters of water later and a good night of sleep and what seemed like a brush with death now seems like a dream.  You throw it off and don’t look back, like a child falling from his bike, still eager for more…  but your partner has a longer memory... he remains haunted, every time you are out in the sun he flashes back to your pale face and sweaty brow slumped over in a heap on the couch, unable to even walk to the bathroom…

More months down the road, and many more setbacks later, you are going to less doctors appointments and more social functions.  You of course rest up before going and have no choice but to lay down again upon returning home. A compromise with your body that you are happy to make.  A peace has been brokered with your body!   A month or two later you bravely get behind the wheel of a car again and REJOICE! 

You have learned to successfully balance what you would like to do with what your body needs. Your spouse is thrilled but leery, a form of Post-Traumatic Stress Disorder known only to caregivers; some of those long days and scary images stay etched in his mind...

So how do you know that your progress is real? Well... odds are, you will want to leave your marriage.

The scales of justice have tipped almost completely over. Your lover, your partner, your friend, unfortunately became your nurse. And you love them for it every day, every minute of every day. But with better health comes freedom and a tug-of-war ensues. Your partner would rather eat glass than to allow you to fall back down into the rabbit hole. And you would rather poke your own eye out with a spoon than to give up even 1 ounce more of your independence. How do we get back on solid ground?

Talking, (read “fighting”)  talking, and more talking.  You must begin to ask for what you need.  But what happens if your mate thinks that they know better than you do?  Perhaps in this interim period you need more communication skills than ever.  You may need to admit that you can tend to overdo it and agree with him that he does have the right to call you out if he thinks you are taking on too much too soon.  Offer up gentle reassurances from time to time that you are doing OK.  And let him know that your plan includes rest time and recovery time.  And agree that you will ask for help when you need it.  PROMISE this, and mean it.  Sometimes we can be our own worst enemy!  And when things get really dicey (and they will) take an hour away (because now you CAN DRIVE!) and remind yourself that this is the person who stayed by you and lifted you up (literally!)  And if all else fails, weekly visits to your therapist! A good trained professional will help you to find your voice again so that your partner can really finally hear what you need instead of deciding for themselves what you need, which is what happened the whole time you were “asleep”.  It couldn’t hurt for them to have their own therapist as well!  After all, they could use someone to listen to all that they have had to deal with!  And at some point you may decide to go to therapy together, not a lifelong commitment, but maybe 6 sessions just to have an impartial professional steer both of you back onto the road! 

This whole thing can be very confusing!  Your champion, your Savior, the person who would (and did) do anything for you, actually does want you to be the person they fell in love with. All they ever really wanted was to have you “back”. So then why do they resist this change so much? Is it out of fear? Is it out of habit? Or is it just impossible for some people to relinquish control? 

Would it help to know this is no one’s fault?  It's "growing pains".  It’s a knee-jerk reaction for your partner to go into protection mode.  Just as it is a knee-jerk reaction for you to want to pull the control back toward you. When one partner is so sick and the other partner is the caregiver, it is the same relationship as the parent-child relationship. Just as a teenager must spread their wings, so to must you when you are finally, finally “awake”.