Monday, April 19, 2010

Love and Other Disasters (or How to Stay Married to a Chronic Babe)

This post was prepared for inclusion in the Chronic Babe Blog Carnival... Which I was totally late for. Not sure if it will be *officially* included, but thought it was worth sharing anyway since I wrote it! This week's theme is 'Love, Illness and Other Confusing Things.'

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Some people begin a relationship with their eyes half-closed, coasting along and basking in the perfection of love and life.

We are not one of those couples.

When Geoff married me, he knew exactly what he was getting himself into. Okay, maybe not EVERYTHING... I still think he was caught a little off guard by the intensity of my love for bad 90s power ballads. But he knew that I was sick - and when he married me, he married me + my disease. For better or for worse.

I wish I was one of those wives who could do it all perfectly. I really, truly mean that with every ounce of Type A personality in my being (and that's a lot... trust me). I long to be the wife that I feel my husband deserves.

But I'm not that girl. I'm a girl with arthritis and fibromyalgia and chronic fatigue. I hate it, but that's who I am. I'm a girl who often finds herself so exhausted at the end of the day that I fall asleep on the couch. I'm a girl who can't always follow through on what I said I would do, because flares can be so unpredictable. I'm a girl who gets really excited about walking to the park, but then panics once I get there because I realize that I'm too tired and in too much pain to walk home.

And I'm not going to lie. It's a stress in our relationship. I often think that - without my disability - we would never fight at all. It's not that we don't love each other, or that we're not trying. It's that we speak different languages sometimes. My husband speaks the language of healthy, 'normal' people. And I speak the language of chronic illness. Neither is right, and neither is wrong. But there are days when we desperately need the services of a translator.

And so, I present to you my guide to being married (and - let's face it - STAYING married) to a chronic babe:

1. Check in often.
Don't be an ass about it, but be sure to ask how she's doing - even on days when it appears that things are going well. It lets her know that you care and that you're aware, and it eliminates all the guessing games. It's sometimes very difficult to judge how she's doing just by looking at her - chronic babes are actresses out of necessity and have honed their craft over years and years of practice. She might not always volunteer information about how she's feeling because she's scared of sounding like a whiner. And she might be 'faking healthy' in front of other people just to avoid awkward conversations with people she's not comfortable discussing her personal health challenges with. By asking, you significantly reduce your risk of saying something truly stupid or expecting too much of her. It allows you to function as a team. And teamwork is key to a chronic marriage.

2. Develop a disease vocabulary.
I find it incredibly difficult to verbalize every symptom I'm experiencing or how each one is making me feel on any given day. My husband is a nurse, so he's used to asking patients about their pain relative to a ten-point scale. I have developed my own ten-point scale of yuckiness. For me, the scale encompasses pain, fatigue, depression, and all my symptoms rolled up into one. When he asks me how I'm feeling, I don't always need to launch into a big detailed explanation - I can just say '8' and he knows that I'm having a tough day, or '3' and he knows that I'm doing okay. There are probably an infinite number of different ways to 'measure' or communicate the current status of your disease, and I encourage you to find one that works for you - or maybe even one that makes you laugh.

3. Let her make bad choices.
NEWS FLASH. Life with a chronic illness is not exactly a picnic. It's full of doctor's appointments and new meds and balancing diet and exercise and worrying about more things than you can probably imagine. Sometimes, your chronic babe will choose to use her energy to do something just purely for FUN. Sometimes, that fun thing might cost her a lot and land her in bed for a couple of days after. That's her prerogative, and the last thing she needs is for you to point out that she might be taking a step backwards my participating. Trust me, she is intimately aware of the consequences of the decision she's making. But sometimes living life takes precedence over chronic illness - and sometimes it should.

4. Make a plan.
Take advantage of a good day to talk about how to handle the bad ones that are sure to come. Find out what stresses her out most when she's sick, and figure out if that's something you could help with on her bad days. Find out what makes her feel better, so you're not just standing around wondering what to do when the next disaster strikes. She's not always going to be able to communicate these things (or communicate them NICELY) on her sickest days. But she'll be forever grateful for a husband who knows to clean up the kitchen while she's soaking the worst parts of her pain away in a bath. And making a plan helps you step inside her world just a couple of minutes. Living well with a chronic illness means that EVERYTHING is calculated. I don't get up from the couch and walk upstairs to pee without first planning to make that trip as efficient as possible. Before I move a finger, I've already figured out exactly how I'm going to get up, what I'm going to take with me that needs to go upstairs anyway, what I can bring downstairs again to save myself another trip, what else I can do while I'm already standing... It would literally blow your mind to spend two minutes inside mine. Planning is the key to success.

5. Become an expert.
I think I can confidently speak on behalf of all chronic babes and say that we don't want you to think 'sick' every time you look at us. But taking the time to learn about our disease(s) communicates to us that you care. And being knowledgeable enough that we can talk to you about what happened at our latest doctor's appointment is a strange but surefire way to say 'I love you' to a sick chick. It doesn't mean that it's all you need to talk about - in fact, that would be TERRIBLE - but it means that the quality of those conversations will skyrocket. And that leaves more time and energy to just be married - which is the ultimate goal after all. I desire normalcy in all its forms and believe it or not, talking about my disease - instead of turning it into the elephant in the room that is never acknowledged - helps make it more normal for me.


I'm dedicating this post to Geoff, for knowing what you were getting into and choosing to love me anyway. I love you for so many reasons, but maybe most of all for making the decision to join me on this adventure. And to Briony, my baby girl who didn't have a choice but is growing up with a chronic mommy. It's not always going to be easy, but there's a heck of a lot of love in this family and it will get us through. I promise.

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At April 19, 2010 11:30 AM, Anonymous Marilyn said...

Beautifully written - and now we know to ask for a 'number':) Just want you to know that we would all take a bit of your pain if we could.

At April 19, 2010 11:55 AM, Blogger Lindsay said...

Actually, that would be AWESOME.

I'm totally kidding. If there's one thing that my mom's cancer journey taught me, it's that it is usually easier to be the patient than the one loving the patient. It's not that being the patient is easy (AT ALL), but it's sometimes a more comfortable role. And it's so painful to feel so helpless.

At April 20, 2010 6:00 PM, Blogger Pissed Off Patient said...

Great post! Some good tips here.


At April 20, 2010 7:08 PM, Anonymous Rachel said...

This is great - my husband is a ChronicDude but he still has had to wrap his mind around my anxiety and pelvic pain issues.

At April 20, 2010 8:30 PM, Blogger Dana Marton said...

That was so helpful for me. It is always interesting to get ideas from other chronicbabes! Thanks. Well-written too! Dana

At April 21, 2010 9:18 AM, Blogger elisabeth said...

Thank you so much for sharing this! I tend to think of what *I* have to do to communicate my needs more- I never thought about setting a guideline for the hubby. :}

At April 21, 2010 9:19 AM, Blogger Jamee said...

This is such an awesome post! Thankfully my hubs is diabetic (type 1) so he understands more about chronic illness. But these tips are great! Definitely going to share this with him!

At April 21, 2010 1:01 PM, Anonymous Momma said...

It's cool to see that others can benefit from what you've figured out works for you and Geoff. I'm glad God brought the two of you together. He's a great guy with a heart of gold but even great guys can use some help in deciphering the needs of a Chronic Babe :)

At April 22, 2010 2:00 AM, Blogger shalunya said...

Great advice. Thank you so much for sharing.

At April 22, 2010 10:33 PM, Anonymous Anonymous said...

This post had me in tears... dont' totally know why - but it's great!

At April 26, 2010 9:46 PM, Blogger Chili said...

Love this post. I left it open on the computer and the hubster read it and it started a really great conversation about the ways we communicate and things he can do to understand the language of chronic illness. :)


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