This morning, I writhed out of bed and stood up, shifting my weight onto my right side. The lights were out, so my husband couldn’t see my grimace. But he knew something was up.
I grunted. It felt like my left kneecap was about to propel in a fiery shot through the back of my leg.
Psoriatic arthritis: 1. Me: 0.
I got moving, aware that a few minutes of motion would help. As I paced, shaking out my stiff hands to enhance the effect, my husband took over the first part of my morning routine by making breakfast for our two-year-old daughter. He encouraged me to make a turmeric smoothie. I did; it was fantastic.
When I got my diagnosis two years ago, just after the birth of our daughter, we knew it’d complicate our relationship — kind of like a temperamental toddler, but 24 hours a day, for the rest of our lives. When my psoriatic arthritis is well-behaved, there’s cause for celebration; when it’s unruly, we must be the best versions of ourselves or, at the very least, the most understanding.
Neither of us are martyrs. I complain loudly when I’m fed up with joint pain, especially in my hands. He sometimes forgets that my weekly yoga classes aren’t wants, they’re needs.
But, in general, we’re on the same page about this thing that neither of us asked for, but we’re managing together. Take food, for instance: Gluten and dairy seem to exacerbate my psoriasis and my arthritis, so our dinners are heavy on proteins and vegetables, whether he cooks or I do.
When I’m tempted by a carb-y dessert at a party, my husband gives me a certain look, and I remember that if I eat it, it won’t feel good later—for either of us. Sometimes I heed the look; other times, I wish I had.
He’s tuned in to my limitations, too. He knows that most days I can’t open bottles or jars without some assistance. It took a lot for me to say “I can’t.”(What kind of woman needs a man to open a jar?) So I said it once and never had to again. He’s also quick to poke fun: “Let me get that for you, hon. I’m the man.”
And on rough days, he knows a joke won’t ease the ache in my hands. He keeps a mental tally of all the things that might exacerbate my symptoms — most of all, stress. He suggests I take a walk or a nap or practice yoga. He suggests I clear something off my plate. And, when necessary, he demands it.
Although we’re still working out the kinks, we’ve found our way to some unspoken rules for our version of chronic love. They all come down to empathy — the basis of strong relationships, platonic or romantic.
4 tips for chronic love
1. Tune in to each other’s mental state. If you’re doing it right, chronic illness affects both members of a couple. Ask how your partner’s hanging in there. Allow him or her to vent.
2. Allow time for self-care. Both parts of the whole need to breathe on their own once and a while. Stress management and exercise are key.
3. Keep tabs on your partner’s limitations. Managing a chronic illness requires lifestyle changes for everyone. A non-chronic partner can stand only so many omega 3-rich meals (read: salmon and Brussels sprouts, again); pick him up a pizza from time to time. A person living with daily pain might not make it through a several-mile hike; plan something with that in mind.
4. Be forgiving. Both people in the relationship are allowed to have graceless moments. (It helps if they don’t fall on the same day.)
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Casey Nilsson writes about psoriasis and autoimmune diseases for HealthCentral. Casey is an award-winning magazine writer based in Providence, Rhode Island. She’s a 2017 Association of Health Care Journalists fellow and her story on unfair labor conditions for people with disabilities was a finalist for the 2016 City and Regional Magazine Association Awards. Follow her on Twitter @casey_nilsson.