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My Favorite Husband

The Honey Hive near TaupoI can’t imagine coping with headaches without Hart’s support. He takes care of me when I need it, no matter how much I resist. When I overdo it, he encourages me to relax. If we have plans to go out, but I’m too sick to enjoy myself, he tells me it’s OK to stay home. When I beat myself up for always being sick/not having any energy/not making dinner/not getting out of bed, etc., he reminds me of everything I am capable of.

He never acts as though I’ve let him down, doesn’t resent of my moodiness and lets me complain when I need to. He doesn’t complain when I get a wild hare (like going to England by myself to follow Dave Matthews) and am too stubborn to back down. He encourages all my career explorations and helps put my ideas into perspective.

He’s caring, patient and understanding. My favorite husband is truly an amazing person and I’m so, so lucky to be married to him.

Happy birthday, Hart!

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Self-Disclosure and a Pleasant Surprise

Chronic illness complicates a person’s social life, particularly when meeting new people. You’ve got to decide who, how much and when to tell others about your illness. Secrecy isn’t always the best option, but neither is laying it all out.

Impulsively shrugging off her lifelong silence about her illness, writer Laurie Edwards got an unexpected response. Instead of walking away, the cute and friendly guy she was talking to asked for her phone number.

“As a new couple, we survived our first dinner with my parents, our first real fight, and our first “I love you.” But soon into it, we also experienced our first surgery together, our first emergency room crisis, and a slew of messy infections.”

“I waited for the reality of it all to overwhelm him, for my illness to crowd him right out of our relationship. I told myself I would understand if it did.”

“‘None of this is ever going away, John. Wouldn’t you rather be with someone healthy?’ I asked one cold winter day. I spoke with the halting confidence of someone who knew the answer but needed to hear it anyway.”

“‘No, because then it wouldn’t be you,’ he said without hesitation.”

[via ChronicBabe]

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How Headache Affects Families

The National Headache Foundation has announced the results of their online survey to better understand how headaches affect a sufferer’s family and what role heredity plays in headache. Findings include:

  • 66% of sufferers have a family history of headache; in 63% of the cases it is the mother that has headache
  • 53% of respondents said that their families do not understand their headache condition
  • 63% of sufferers said that when they have a headache they are unable to attend to household chores such as cleaning, grocery shopping and cooking
  • 79% of family members have to cooking meals and 61% having to handle household cleaning during these periods
  • 63% of spouses or significant others take on extra household and child-rearing responsibilities during a sufferer’s headache
  • 68% of people with headache feel that their spouse or significant other support them when they have a headache
  • 83% of respondents feel guilty about not being able to spend time with their families
  • 66% state that they believe their families feel neglected when they have their headache attacks
  • 50% of headache sufferers feel that their spouse or significant other does not understand their headache issues and needs

From these findings and talking with other people with headache, it is clear that chronic pain can strain even the happiest of relationships. Learning to live with chronic pain can be frustrating, exhausting, exasperating and heartbreaking, for patients as well as their relational partners and families.

Coincidentally, I posted a review of Chronic Pain and the Family on Blogcritics yesterday. The book explores the issues facing couples (as well as children and extended family) who have to deal with one person’s illness. The author offers suggestions for each person in the couple to repair the relationship and shares many additional sources to help couples and families. She also explains the debility associated with chronic pain and the havoc it wreaks on people in pain.

An excerpt from the book is available from the publisher, Harvard University Press.

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Small Talk on ChronicBabe

Not only is ChronicBabe a fabulous new site, it’s a fabulous new site that I’m now a contributor to. Full Disclosure? No Disclosure? One Babe Considers Her Small Talk Options is a version of Too Much Information.

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Too Much Information

Being a young married woman without children and no job makes party conversation pretty difficult. Add being a feminist and living in a new city to the mix and watch it bubble over. In the two years since I quit my job and my husband and I moved, I’ve had many different approaches to small talk.

At first I said that I was getting us settled into our new house and community, then was figuring out what career I wanted to do next. This held up for about six months, at which point I could say that I was waiting to get residency so I could take classes without paying out-of-state tuition. Then I could say that we had some travel planned, so I needed to wait until after that to enroll in classes.

In every conversation, I felt like I came across as a spoiled housewife who decorates her house, drinks lattes and travels on a whim. Not only that, I wasn’t doing very much of anything. While lying in bed, I read a lot of books and despaired over how disorganized the house was. I had nothing interesting and socially appropriate to talk about, and it seemed like everything I did say was about my husband, not me. Appearing as the current incarnation of a 50s housewife didn’t thrill me.

Trying to hide or deny major parts of my life was taxing and felt dishonest, so I went to the opposite extreme. All the pain, boredom and unhappiness was simply too much to keep to myself. Whenever a conversation steered toward me and my work, I found myself telling the gory details to strangers. One of these strangers was kind enough to see that there was good underneath all the desperation and self-centeredness. She has become a good friend, but everyone else was part of a transient relationship. I imagine I scared them all off.

I’ve gotten much better at tailoring the response. I try to dodge the question when I first meet someone. If I can’t, I’ll say I do some freelance writing. If I sense a connection with or lack of judgment from someone, I’ll say that I’m a reluctant housewife. This is always questioned, so I say that I haven’t been working because of health problems, but that I’m getting started on some health education/advocacy/activism work. If someone asks a direct question about the scar and lump on my chest, I’ll give an edited version of the story.

As I write this, it’s obvious that my responses have followed my changing self perception. When we first moved, I still thought I’d be cured soon and would be able to hold any sort of job I wanted to. After it became apparent that this wasn’t the case, I stammered out some excuse or gushed the details. My life was too much for me to sort out on my own then. The excuses lasted a lot longer than the gushing did. They got me through the greater part of a year until I figured out who I was and how to mesh my illness with the rest of life.

Pain dictates so much of what we do, how we think about ourselves and how we relate to others, that it seems like it dictates our lives. Letting the pain be in control for a while may ultimately help us live with it more easily. Some day you may look back on your behavior and cringe. I certainly do, but I don’t regret it.