By Stacey Philpot
On a balmy June evening, with the sand beneath us, the waves behind us and the sun bathing us in it’s golden light, my husband and I committed our lives to one another. “For richer or for poorer, in sickness or in health, as long as we both shall live” we giddily declared our love for one another. Which wasn’t near as frightening as it should have been because, you see, our love was bigger than all of those things and “love conquers all.”
But then the storm hit.
I’d always known I was some sort of sick—sick more often and more severely than others. What I didn’t know was why. I also knew my infections were picking up speed, gaining momentum at an alarming rate. I told myself it was fine. I was tired, stressed from all that wedding planning. I did not tell myself the truth—-that rare disease and chronic illness would soon weave themselves into the very fiber of my marriage, that the “in sickness and in health” portion of our vows would be tested on a regular basis.
Maybe the support beams of your relationship have been forced to withstand high winds and rains as well. Maybe it’s been far harder and less glamorous than you imagined it would be. Welcome to the club. Maybe this is all new to you, and you’re wondering how far your marriage can bend around your disease without breaking.
Here are three tips for making relationships work in spite of rare disease and chronic illness:
- Be Honest. It isn’t always easy for me to hear about how hard my illness is on my husband. But, knowing the truth about how much he’s giving up to care for me helps me appreciate him all the more. Honest communication lets me know when my husband has too much on his plate, and it’s time to ask for help or make a change. (i.e. is it time to hire a housekeeper, call a friend, etc.) Vomiting out all of my emotions about life in the day to day allows me to feel connected to my husband. Knowing I can share my “ugliest” emotions and still be met with love and support is important to me. Honesty keeps us connecting while preventing resentment built on details not shared.
- Invest in One Another. This can be simple and tailored to what your body will allow. Watch a favorite television show together; eat a meal together, call and check-in midday just because. Have a real conversation when your body allows. Every once in a while my husband and I get a babysitter and go on a “hot date” (anytime I put on earrings my husband says it’s a hot date) to the movie theater. The movies are indoors, cool, dark and allow me to sit, making it an ideal outing for my body. It’s relaxing and easy. This might look completely different for you and your partner. Whatever it looks like, don’t forget to make investing in one another a priority.
- Find the Humor. Laughter breaks the tension. It reminds us that we’re on the same team. It lightens the load and pulls back the curtains of darkness. My husband and I make “your mom” jokes at inappropriate times. (Is there an appropriate time? I’m not sure.) I once texted him in the middle of a particularly difficult day to tell him I loved him. He responded with, “ I love your Mom.” I laughed so hard tears ran down my face. Sure, you and your partner will laugh about things that are actually funny, but it’s not a prerequisite. What matters is in spite of the pain, you’re finding ways to enjoy life together.
Yes, the storms of sickness can be fierce. But your love is fiercer.
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.