On the heels of my sister's fabulous guest post on Friday, demonstrating what it's like to be a sibling (and caregiver) of a Lupite, I figure it's a good time to mention two caregiving articles that I recently came across.
One talks about a young husband and wife, working together to battle her four chronic illnesses - celiac disease, thyroid disorder, primary ciliary dyskinesia and bronchiectasis. The article, titled "Living with and Loving an Ailing Spouse", discusses the adjustments they've made in their relationship - sharing household duties, readjusting when she's not feeling up to her part, and his specific efforts to tackle special dietary cooking and learning a sort of physical therapy to help clear her lungs. A touching story that reminded me of the accommodations Johnny and I have made over the years to in order to make our life with Lupus work.
In the second article, a husband talks about the ways he's learned to cope with his wife's chronic depression - writing his feelings down, taking a break when he's feeling overwhelmed, and extending a tender loving hand - among other things. During a particularly tumultuous time in her disease activity, he talks about being called into his boss' office, where she says, "I understand you're going through a tough season...would you tell me about it?" Reluctantly, he starts to describe his wife's illness. His boss says, "No, I don't mean [your wife.] I mean you. When someone is sick, everyone in the family suffers. Tell me about you."
How true this is. A chronic illness doesn't just affect the person who has it. Everyone involved has to learn to deal with the disease, and with the person who has it, both of which are challenging. And as the person suffering from a chronic illness, I can tell you that dealing with others isn't always easy.
While I wish I could say that Johnny and I never struggled, there were times when I know we weren't handling the effects of Lupus the right way. For instance, Johnny and I used to play off one another's optimism, neither of us wanting to admit that I was really sick. Both of us were holding out, trying to be the positive influence in a very dire situation. I think each of us was hoping that the other would be the one to say, "Enough is enough." Eventually, we were able to make this conclusion together, but I think we'd both agree it was a decision that was long overdue.
And although you'd never know it today, my sister and I shed many a tear during my toughest years with Lupus, due to our differing approaches to my disease. As a concerned big sister, she, of course, wanted me to avoid engaging in any activity that might flare my disease. Her concern, while well-intended, made me feel confined and restricted. The more I tried to push my own limits to maintain my sanity, she was there to try to clip my wings for safety. Neither of us were wrong, but we both had to learn to modify our approach in order to make the relationship work. It took time, but it was worth it.
Over the next few posts, I'll highlight points from my book that you can keep in mind as you try and deal with those around you.