Monday, March 23, 2009

Dealing with others...oh, the challenge


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.
To find out more about the articles I cited above, see the links below:
Health Monitor. com, article: Living with and Loving an Ailing Spouse by Margaret Dick
A Tender Touch by John Sherrill (as found in Guideposts Magazine)

4 comments:

Edward said...

Loved your post and appreciated the plug for Guideposts, of which I am the editor. I'm also married to someone with Lupus. Never knew I could call Julee a Lupite! -EG

cj said...

Hi, I'm new at this blog world. I assume you are an individual writing this blog. Your insights show a lost of personal growth and reflection - someone who lives with the disease and seeks to understand it's role in our life and relationship. I'd love to know more about you as I want to find others who have really struggled with Lupus. It sounds like the worst of you Lupus is over??? I am currently in the hospital - 30 days in ICU, another 10 before and after. I now have a trach and hope to go home by the end of the week. My blog is a lupus transformation on blogspot. I'm sorry but I'm just learning so I don't know how to give you a link. My husband will help me tomorrow. Anyway, I'd love to correspond more if you're interested. Rose

Sara Gorman said...

Edward - Thanks for stopping by! So glad to hear from you - and thanks for putting out such a great magazine. Look for more references to come in the future!

And I wish your wife all the best - I hope she agrees that the term "Lupite" has a certain je ne sais quoi!

Hope to hear from you again.

Sara Gorman said...

CJ - Thanks so much for stopping by, and welcome to the world of blogging. When you get the chance, give me your blog address - I'd love to check it out and keep tabs on how you're doing.

Best wishes for an easy transition home from the hospital - I remember coming home from my hospital stay and realizing how easy it was to keep my activity level in check while I was there. Coming home and learning to listen to my body was the hardest for me!
Hopefully - the worst of Lupus is behind you, too. I'll be thinking of you.

And thanks for your comments about my blog. I really appreciate it!

Stop by anytime!