By Katarina Zulak
To all the partners of people living with chronic illness who share their love and support on the good days and the bad days – here’s to you!
I first met my now-husband ten years ago. I had just finished university and we were in an internship training to start a career in international development. There was an immediate connection based on shared passions, personalities and sense of humour. After our internships, we started dating. My crush quickly grew into love. Within six months we were in the full-blown “I can’t live without you” phase. We spent a year in a long-distance relationship, writing love letters and pining for each other when we were apart, and traveling Europe on romantic trips when we could be together. It was as stereotypically lovey-dovey as you can imagine (and are probably rolling your eyes over)!
I love thee to the depth and breadth and height
My soul can reach…” -Elizabeth Barrett Browning
The life we imagined for ourselves was so very different from the life we live. We wanted to live abroad, work in developing countries, and live an exciting life together. But within two years I began experiencing chronic pain. Four years in, I was diagnosed with fibromyalgia. Instead of abroad, we live in our home town. Instead of working in the same field, I stay at home. Instead of seeking out new experiences, we work hard to do the ordinary things like visit family or go on a date. But the biggest difference is that I am dependent on my husband’s care for everyday functioning.
It can be very hard not to feel like a burden or wonder if this shared life together is a disappointment. As the dependent partner, I wonder what I contribute positively to my husband’s life. The excitement and passion of falling in love is no longer the nature of our relationship. That goes for many life partners after the initial honeymoon phase. However, living with chronic illness makes it even harder to share romance because of the unpredictability of flare ups (cancelled dates, anyone!?) and the stress of illness. When everyday life is such a struggle, I feel guilty for bringing all this into his life. But then my husband looks at me and says “But we’re together,” and that’s all that matters.
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Recently I had a laparoscopy to treat my endometriosis. After the surgery, I needed round-the-clock care from my husband – help standing and sitting, help getting dressed, help preparing food. In that state of complete dependence, I learned something new about love. When I needed my husband the most, he was there. When I was at my most vulnerable, he gave me unconditional support and tenderness. That’s the definition of love. Instead of draining or burdening our relationship, this painful procedure strengthened our bond.
“We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known, and when we honor the spiritual connection that grows from that offering with trust, respect, kindness and affection.” –Brene Brown
The universal truth is that “no man is an island.” We all need other people. Chronic illness brings this truth into sharp relief. I used to struggle against this reality, fearing dependency was a form of weakness. What I have learned is that being vulnerable enough to accept help is a strength. Having intimate trust in your partner deepens your love and brings you closer together. Without chronic illness, I don’t know if I would have ever learned this lesson or experienced love this way.
“Love is a temporary madness. It erupts like an earthquake and then subsides. And when it subsides you have to make a decision. You have to work out whether your roots have become so entwined together that it is inconceivable that you should ever part. Because this is what love is.” –Louis de Bernieres
My husband doesn’t love me in spite of my fibromyalgia. I find it incredible but he truly wants to be with me and share our lives together regardless of any challenges caused by illness. When you love someone, you would never exchange an easier life for a life without them, because it wouldn’t be worth living. Without being tested by chronic illness, I am not sure I would have learned how powerful and how healing that kind of love can be. Life with chronic illness is messy and challenging, but I am grateful for the lessons I have learned about love on this journey.
Katarina Zulak is a health coach and ePatient blogger. Five years ago she was diagnosed with fibromyalgia. On her health journey, Katarina has learned about the power of self-care skills to improve her health and well-being. She obtained her health coach certification from the Sears Wellness Institute as a way to channel her passion for partnering with others working to improve their wellness. On her blog, Skillfully Well & Painfully Aware, she writes about learning to be skillfully well, even when living with a chronic condition. Katarina lives in Toronto, Canada with her husband and their cat Lily. She loves learning, reading, being outside, Netflix, calligraphy and coffee!