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How My Husband and I Make Our Marriage Work, Even With Chronic Illness

For starters, we don't keep score.
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Image Source/Getty Images/Graphic by Cristina Cianci

Learning to live with a chronic illness is a lot like throwing darts at a moving target in the dark. And when you add another person into the mix, things can get even trickier. But after years of trial and error, professional help, and some brutal honesty, my husband and I have devised a few ways to keep our marriage healthy and mutually supportive, even though my fibromyalgia diagnosis makes that extra challenging.

Fibromyalgia is a disorder characterized by widespread pain. According to the Mayo Clinic, it's often accompanied by fatigue as well as mood, memory, and sleep issues. It's thought that the disease amplifies pain by affecting the way the brain interprets pain signals. It often comes on after physical or psychological trauma or stress, but it can also accumulate over time with no apparent trigger.

I was diagnosed with fibromyalgia about six months after my now-husband, Nick, and I started dating.

For about five years prior, I’d struggled with persistent fatigue, tingling and aching in my hands and joints, dizziness, and mental fog. After an array of tests on my brain, nerves, and joints all came back normal, five different doctors dismissed my symptoms as stress-induced or psychosomatic. Because there is no test for fibromyalgia, doctors typically rely on things like an MRI, EKG, EEG, X-ray, and complete blood panel tests to rule out other conditions, according to the Mayo Clinic. “Widespread pain,” defined as pain on both sides of the body and above and below the waist, for longer than three months is a defining characteristic of fibromyalgia and a guiding criteria for diagnosis, according to the American College of Rheumatology.

After being on a months-long waiting list, I met with a rheumatologist, a doctor who specializes in endocrine and autoimmune disorders, who agreed my symptoms were characteristic of the disease. Since there’s no known cure for fibromyalgia, medications are used to treat the symptoms, but not the underlying cause. The Food and Drug Administration (FDA) has approved certain SNRI antidepressants to help ease fatigue, as well as pain relievers and anti-seizure drugs to help reduce nerve pain.

When I learned my diagnosis, I sat down with Nick and handed him the pamphlets my doctor had given me. The next day, he came back with a book called Fibromyalgia: A Guide to Understanding the Journey by Shelly Bolton. “We’ll figure this out,” he said. “And we’ll do it together.”

Marriage is hard enough, but adding a chronic illness to the mix can break even the strongest relationships.

Approximately 75 to 90 percent of fibromyalgia patients identify as female, according to the National Fibromyalgia and Chronic Pain Association.) And there's some research to suggest that divorce may be more likely later in life when a wife becomes ill (compared to cases in which the husband becomes ill).

“Many marriages are ravaged by chronic illness, but I believe with the right approach, chronic illness can strengthen a marriage," Illinois-based trauma counselor, couples therapist, and clinical social worker Julie Barthels tells SELF. “In my practice, I see that women are very comfortable in the caregiver role and are able to provide the physical care and nurturing necessary to keep a marriage strong," she says. "Men are more socialized to provide the financial resources. I am curious to see if this changes with millennials."

“Why are you even with me?” I’ve asked Nick from the couch when I’m too tired to go out after work, or after I snap at him out of pain-fueled irritability. The answer’s always the same. “Because I love you,” he says simply. “And you don’t give up on the ones you love.”

Over the years, my husband and I have learned several key coping mechanisms that keep us working together instead of against each other. Together with a team of doctors and specialists, as well as lots of trial and error, we’ve found several tricks that work for us.

We do daily physical and mental health check-ins.

From the very beginning, Nick and I promised we’d get through this together. That requires honesty—I don’t hide when I’m not feeling well, and he doesn’t hide his frustration. Rather than trying to “spare” the other, we check in on a daily basis, and that includes checking on both mental and physical health.

That means asking specific questions and really listening to the answers. Instead of “How are you feeling today?” Nick might ask, “On a scale of 1-10, how high is your pain?” In turn, if I’m feeling fatigued or overwhelmed, I’ll say so, giving us the opportunity to talk it out.

According to Annmarie Cano, Ph.D., professor of psychology and associate dean of the graduate school at Wayne State University, that type of honest communication is essential to a relationship’s success. “Couples must develop a habit of knowing how they’re feeling, learning how to express it to the partner, and really listening in a non-judgmental way when the partner discloses emotions that might heighten the other partner's distress,” Cano tells SELF. “Sometimes partners get so distressed, they tune out, which does not help the disclosing partner manage their difficult emotions and can lead to increased distance.”

While dealing with illness is taxing, so is living with someone who does. Nick’s feelings about how my symptoms affect him are just as valid as the symptoms themselves, and we’re both entitled to our feelings. That also means we work to educate one another. We share research, books, and articles on living with chronic illness so we’re armed with the language to communicate about our circumstances.

We work with—not against—my limitations.

As we’ve gone through this chronic illness journey together, we’ve had to learn where my boundaries are. My body processes stimuli differently than the average person’s, so awareness of how it’s going to affect me is essential. Fibromyalgia patients may feel more pain than would be expected based on the amplification of pain through their central nervous system, according to a 2014 clinical review by Daniel Clauw, M.D., researcher and director of the Chronic Pain and Fatigue Research Center at the University of Michigan.

He compares that heightened response to tuning an instrument. “Pain processing is akin to the loudness of an electric guitar,” Dr. Clauw tells SELF. “To make the guitar louder, you can either strum the strings harder (i.e. there is something going on in the tissues) or increase the volume control on the amplifier (i.e. there is something going on in the brain)—which then makes all pain and sensory information more intense.”

Even a day of too much stimulation—say, walking around a busy festival or working around the house—will turn my dial up to 11, and make it hard to get out of bed the next morning. That means we have to plan carefully, but it doesn’t mean we stop going out. We could all use a little balance, and my limitations just demanded that we learn that sooner rather than later.

We know that supporting our relationship takes a village.

Keeping us resentment-free requires a three-tiered approach. First, my rheumatologist keeps my physical health in check. Second, my talk therapist provides tools to keep our mental health—and our marriage—stable. And third, my husband and I work together to implement those tools and keep our relationship strong.

According to the Anxiety and Depression Association of America, people with chronic illness and their caretakers are both at increased risk for depression and anxiety. They report about 20 percent of people with fibromyalgia also struggle with anxiety or depression. A combination of talk therapy and eye movement desensitization and reprocessing (EMDR) therapy has helped me learn how to reduce anxiety and has taught Nick and I coping mechanisms to incorporate into our lives.

Keeping shared to-do lists and putting even the smallest tasks on our shared calendar helps reduce my anxiety about fibromyalgia interfering with my ability to get work done. Deep breathing, visualizing calm settings, and sitting quietly together instead of spiraling into destructive thought patterns all help me stay calm during anxious moments.

We don't keep score (of chores, pieces of pizza, or anything else).

If I’m having a high pain day, my joints feel like shards of glass have replaced my cartilage and my hands ache like I’ve been squeezing a stress ball all night long. When that means I can’t take the garbage out or unload the dishwasher, Nick picks up the slack without a second word. If I’m feeling great and can get a few more chores done while Nick relaxes, I take on a little more that day.

That rhythm only works if we’re totally honest about what each of us needs from the other. Emotionally supporting each other is as important as, say, replacing the toilet paper. I can’t be afraid to ask Nick to take out the trash, just like he can’t resent me for being in pain and unable to do it. For both of our well-being, we’ve agreed that has to be OK.

"In sickness and in health" means today and someday.

Dealing with chronic illness is a long road, but so is our life together. When we looked into each other’s eyes and said our vows (even after I flubbed the words) we promised to do this thing forever. In all likelihood, Nick will face his own health struggles someday and he knows I’ll be there when he does.

The first time I shared my health challenges, Nick shrugged and said it didn’t matter. It still doesn’t, and it never will. Because we don’t give up on the ones we love.

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