My husband does all of the cooking, because he loves it so much more than me. And he feeds the cat, because the cat is his. Everything else in our life is a joint effort, which started because he used to be a corporate pilot. Sometimes he’d be called away with only hours notice and could be gone for several days at a time. Our zoo of a home – dogs, fish, a cat – couldn’t come to a screeching halt every time it was left in my care.
Even though being a corporate pilot is no longer his full-time job, our sharing of duties hasn’t changed. We’ve only been married for four years, but we’ve gotten used to sharing everything. So when I was diagnosed with ITP, things got a little weird.
You can’t share a diagnosis. As much as he’d probably like to share the physical burden, that’s all on me, too. What I feel about it is definitely not what he feels. So we’ve been talking about how we’ve learned to be partners to fight for healing when it feels like the fight is singularly mine.
You’re allowed to have differing opinions. This is perhaps the most important lesson we’ve learned in the 18 months since my diagnosis. I don’t mean you can differ in opinion from your care team – although that is also possible and totally acceptable. I’m saying you don’t have put on the front that you’re telepathic, answer every question exactly the same, and have a near identical vision for the future. Just yesterday someone asked what we want, and we both answered completely differently. Marriage didn’t and won’t make us the same person. But it did help us acknowledge and make space for the other person’s needs and wants. If he wants to go fishing and I’m not feeling super great, sometimes I pack up and go anyway. If I need an evening on the couch with a movie, he makes space in the schedule for me to get some rest. We don’t even have the same exact opinion on how to proceed with my treatment, but that’s okay. A difference of opinion isn’t going to change the amount of support in our relationship.
SIDE NOTE – Some people would instead call part of this lesson “making sacrifices,” which I completely detest. It implies that there is a winning and losing side, and a sacrifice may help you win or gain an advantage. As a patient, it’s really difficult to look at my health or my marriage as a win/lose situation. I’d be setting myself up for a huge disappointment to think of the outcome as strictly win or lose. It is what it is. There is nothing inherently good or evil about my illness. And his decision to set aside his schedule to care for me doesn’t mean he has lost.
It’s important to set aside plenty of “space.” This goes back to the spoon theory and making sure you and your spouse have enough time to recharge and recuperate. Caregivers need rest, too. While I’ve noticed that physical space dedicated to rest is really helpful, we’ve both recognized how valuable it is to have free weeknights. It gives us the flexibility to take care of things as we are able without feeling pressured by outside commitments. Home is a sacred space for us, and we are cautious about opening our doors and our time to others out of respect to each other and the rest we need.
Planning for the worst-case scenario eliminates worst-case scenarios. Someone actually said to me, “Oh, honey, you can’t think like that. You have to be positive!” Maybe she was some kind of yogi and believed positive thoughts have magical healing powers. We aren’t encouraging anyone to be pessimistic about chronic illness outcomes, just to be clear. As an example, last year, I had multiple infusions that each cost thousands of dollars. Once we realized just how strenuous this could be on our finances, possibly for the rest of my life, we immediately took measures to ensure we were prepared to handle the worst case financial and health-related situation. Chronic illness is hard enough. Planning ahead eases some of the stress should things take a turn for the worse.
Talk about it all, not for the purpose of dumping on your spouse but for the purpose of complete care. This goes both ways. We talk about my health, his health, what we’re feeling, what we’re learning, what we desire, what we know. We commit to helping the other be the best person in the middle of all this hard stuff. We hold each other accountable to shine the light of Jesus even when we feel like crap and would rather not deal with people. We help each other fulfill the commitments and promises we make to the other people who need us. We try to live as openly as possible to each other, which I’ll readily admit I’m always needing to improve.
Finally, sometimes we just have really bad days. I cry. We argue. I feel the full range of emotions: fear, loneliness, anger, self-pity, sadness, frustration. We talk it out, and sometimes we don’t. Sometimes we just move on. When I asked him if he worries about what’s coming next, he said, “I can’t, because I just look at each day as it comes. I can’t control any of that, so I don’t worry about it.”
Photo credit: Miranda Fuchs Photography