A Chronic Dose | A blog about chronic illness, healthcare, and writing.

What Bridal Boot Camp Didn’t Teach Me: How to be a Chronic Wife

When I got engaged, my mother gave me her yellowed copy of the Better Homes and Garden’s bride-to-be handbook. It was a nostalgic gesture since her mother had bought it for her, and much of the advice was charmingly anachronistic: gelatin molds were not in our meal plans, and I didn’t see myself having time before we both headed out the door each morning to arrange a multi-course breakfast, complete with freshly-cut flowers.

So the hardcover handbook made its way to bookcase, and a slew of bridal magazines soon took over the coffee table. I had no end of advice on how to choose dresses, where to go for a honeymoon, and what I should look for in florists. At my church’s marriage prep course, we spent a few evenings with strangers discussing our finances, spirituality, and sexuality. Slightly awkward, yes, but helpful.

Armed with all this engagement ammunition, I thought I’d covered all the bases. But what I didn’t stop to think about was exactly how I would approach being a Chronic Wife, and all the adjustments that entailed—and of all the roles and responsibilities my new life would demand, this was one of the most significant.

I’d gotten the role of Chronic girlfriend down well. There had been the initial hesitations—will he get scared off by all this?—and the pivotal breakthrough moments—realizing I liked having him there when I recovered from lung surgery and didn’t need to hide my realities from him. I loved that I had found someone who accepted me, medical calamities and all.

From the beginning, illness was a part of our relationship. Sounds obvious, yes, but it wasn’t always that easy to be forthcoming. Before we’d said “I love you” we’d battled through some scary infections and complicated procedures, so I knew we had what it took to face things together in the long term.

The hard part for me was that I was used to being the one in charge of my health, whether that meant deciding when to call the doctor or go to the hospital, deciding how many work-related projects to take on, or dealing with a new diagnosis. I turned to my family when I needed support or advice, because both my parents had been sick my entire life and understood my situation so well and my brothers were more than used to thinking in terms of chronic illness.

But now I needed to work John into this equation, terminally endearing and shockingly healthy John. On one level, I needed to break away from my habit of dealing with issues or making decisions on my own or with my parents. As my husband, he needed to be the one I turned to for this, just as I turned to him with everything else. He was willing and able, and I had to trust him with that one last piece of vulnerability.

But this was about more than whom I should consult when faced with a medical decision. On a deeper level, it meant realizing that each decision I made affected him, too. It wasn’t just about me anymore, or how much I wanted what I did to define me, not what I had.

If I took on too much work and my adrenal depletion worsened, he was the one who had to pick up the extra slack, whether that meant folding all the clothes I’d meant to finish, ferrying me around to do errands when I was too weak to drive, or skipping events we’d planned on because I couldn’t get out of bed. If I didn’t slow down when I had a respiratory infection and it lingered, it was John who spent nights sitting in a chair next to my hospital bed, sick with worry and exhausted.

Of course, I can’t always control when I have bad days—they are simply part of chronic illness—or when I get infections that won’t respond to medications and I need to be hospitalized. My husband understands that, just as he understands my need to keep pushing. But he’s helped me find a balance between the two.

What I can control are things like staying on top of my daily chest physiotherapy, making realistic decisions when committing to events or making plans when I am not feeling well, and pacing myself when it comes to figuring out how many writing classes I should teach each semester or how many freelance gigs I can juggle at once. The “old” me jumped at every opportunity without thinking, so eager to prove to myself that being sick didn’t mean I couldn’t do everything I wanted to do, and the old me often lived with the serious consequences of that.

I wasn’t going to drag John into that same old cycle.

The married me still has that impulse to jump each and every time I see a great writing gig, another section of a class opens up that I can teach, or I think of some new independent project I just have to start. I’d be lying if I said I didn’t. The difference is now I actually stop to consider the ramifications on my health and my marriage.

It’s good to turn to him when I make a decision, but even better to consider what my decisions mean for him before I make them at all.