Eight (Actually Useful) Ways to be a Better Spouse to Someone with Chronic Illness

1. Develop a fondness for take-out.

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Our night in shining armor doesn’t come bearing a sword. He comes with a Publix sub. Or any kind of take-out really. R.J is the king of take-out. He knows I can’t always make it out for dinner and we always have a good time feasting on our couch with Netflix. Eventually it makes going out a pretty special occasion. I might even leave the flip-flops at home. Protip: Week two of us dating, head cold, he brought me miso soup…And eight years later I’m doing his laundry. You do the math.

2. Find the thing that makes them laugh no matter what. Then test it at their worst moments.

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This video.  This Picture. I just looked at them both and I can’t stop laughing. It’s like the really, really stupid laugh. The kind where you’re so embarrassed by how entertained you are that you’re laughing not just at the thing, but at you enjoying the thing. This is like visual Xanax to me. A good SO will always have one of these triggers in hand.

3. Accept that tears are no need for alarm–or even a personal reaction.

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Any given Tuesday you can find me on the couch, silently bawling because I either can’t get up off the couch, or my pain meds never kicked in, or someone used my body for a pincushion. Crying is like sweating for someone with chronic illness. You can put on deodorant. You can flap your arms around. But at the end of the day, sometimes you just stink and it has to express itself thus. Don’t be alarmed or even feel like you have to give some kind of encouraging pep talk. Sometimes R.J just sits there, wraps his arms around me and starts singing this….

4. Enforce the decisions they made about treatment before the pain or concern that they’d be bothersome strikes.

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Ambulances are expensive. And if I can, at any point, be moved without my neck breaking when I need to go to the ER–I expect R.J to haul me into the Nissan and get me where I need to go. Even a few weeks ago when every time I moved or breathed I couldn’t stop dry heaving and felt so faint that I thought I might never be able to actually stand up–he hauled me to my face and somehow got me down the stairs and into the car–because I don’t take ambulances if I can help it. And if he can help me, I can help it.

5. Do your own thing.

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“K, Babe–I’m going upstairs for a nap.”

“KLoveYou–DUDE KILL THEM, KILL IT!”

I have naps. RJ has DOTA. These things provide us with “me” time and that is a good thing for us.

6. Ask, care, learn.

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What medications I take. Whether or not I’ve signed at DNR. What unable-to-function translates to in terms of my facial expression.

7. Tell your family what they need to know.

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This is always such a vague and weird subject. Everyone in my family knows what’s happening in my life as far as my disease goes. They understand my symptoms and it’s common knowledge that when I go into a migraine cycle I can’t drive at night and when I’m having a GP flare I can’t really eat anything but bread and broth–and sometimes even that sends me running. But with R.J’s family–it’s different. He doesn’t really keep them super informed about what’s going on with me and I’ve worried in the past that this has translated into me looking like I don’t care about going to certain dinners or trips or don’t eat something they’ve spent a lot of time making. I don’t want to overwhelm them with all the details, but it’s nice if your SO can bridge the gap and help you to explain certain situations so you don’t come out of them looking like you don’t care who you offend.

8. Know the team. Have a way to contact the team and get permission to do so.

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If you’ve ever been to a doctor–and let’s face it. If you’re here, you’ve been to a lot of doctors. You’ve probably signed a consent form that would allow your doctor to tell your emergency contact any information they might need to know about your care. It doesn’t happen very often, but on the rare occasion that I am unable to speak for me, R.J knows how to get in touch with my medical team and can help coordinate joint rescues.

 

Ok, your turn! What’s the best tip you have for upgrading your significant other’s mad compassion skills?

Comments

comments

  • Dan gives me foot rubs, even when he’s exhausted, because they will almost instantly calm my nerves down if I’m at the beginning of a fibro flare. He’ll also give me massages when I’ve “accidentally” overdone it, again. (I do that a lot, I’m pretty stubborn about pushing myself to do what I want even when my body says no.)

    My insomnia keeps me up pretty late (if it’s before midnight I can pretty much guarantee I won’t be sleeping even though I would love to be), but he has to be up really early for work. So we get ready for bed together (I need help up the stairs and doing other nightly things quite often), and then he snoozes while I do my thing next to him until I can fall asleep. But if I need something, and wake him up, he doesn’t complain… he’ll just get up and grab it for me and go back to sleep. Rather fantastic setup really. He even walks me to the restroom if my muscle relaxant is kicking my butt.
    Semi-related note: Sometimes I’ll have anxiety attacks while trying to sleep, just because my brain has panicked over something dumb. If that happens, he knows that I need to talk at a million miles an hour to calm myself down again (same happens with my nightmares/terrors)… even when he’s dead tired he will do everything he can to stay awake and respond occasionally until I have gotten rid of the nervous energy and can go to sleep.

    One thing I love, that I just started noticing (because it’s been more necessary) is that he’ll always have an eye out for somewhere for me to sit. If he thinks I’m looking tired (remember that stubborn thing?) he’ll say “Oh look, a bench, let’s take a break” and guide me to it. That small gesture means the world to me, and melts my heart every time 🙂

    Aren’t loving significant others the best?!

    • Mary Ann

      Mine has recently learned to do many of the same things. He is looking out for me more. It is very comforting.

  • Mary Ann

    What I would add is this: offer us an out.
    If you know we’re pushing ourselves, are having a rough day, or can see that look that says I hurt, offer us an out. It is often hard to say we can’t physically do something (dinner, swimming, etc.). We want to join our families. We really, really do. So much so that we will put on a smile and fake it til we make it, often hurting ourselves more in the process. Maybe offer to bring dinner over, or watch a movie in. Anything that minimalizes our pain.

  • Kevin matheny

    Thank you for writing this article. To all the S O. Don’t be a SOB, had to learn the hard way. Remember that sometime when you make plan be understanding when they can make it or are hurting.