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Blog Dedicated to Chronic Illness and Marriage

Chronic Marriage is a fabulous blog on chronic illness and marriage that I’ve just stumbled upon. The blogger, Helena Madsen, not only discusses issues that relationships face when one partner has a chronic illness, but gives concrete suggestions for coping with them. Some that have caught my eye:

The posts are directed toward married heterosexual women, but much of the advice seems like it could be applicable to all romantic relationships. I highly recommend check out this blog!

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Chronic Illness and Marriage

Chronic illness and marriage is such a complicated combination that it’s rare to see a healthy spouse’s perspective on their partner’s chronic illness. I read Living With a Husband’s Chronic Illness Has a Bad Effect on His Wife’s Health eager for insight. I didn’t like the insight I got.

I genuinely wanted to read what this woman had to say, to see her difficult experiences and uncomfortable thoughts laid bare. My immediate response? To get defensive and write a long post about it. The gist: “How unfair that she’s taking her husband’s illness out on him. Does she realize he may be watching too much TV because he can’t do anything else? And, yes, that includes folding the laundry while watching.”

Instead of posting my inflamed response, I re-read the article many times over the week. , the author, knows she’s being unfair, but she’s exhausted and burnt out. She knows her husband isn’t to blame, but she doesn’t know where else to direct her anger and resentment. (She may not know that it’s possible to be too sick to fold laundry. I expect not many people can understand that unless they’ve lived it.)

Writing this article took tremendous bravery. Lewis admitted ugly truths about herself and her thoughts and published it anyway. She wrote honestly about a topic so painful and verboten that few people are candid about it (especially in print).

Of course I don’t like what she had to say. I have a chronic illness that’s had a tremendous impact on my husband. I’ve heard the saddest stories about how chronic illness destroys relationships. There’s an oft-cited statistic that the lifetime divorce rate is 75% for people with chronic illness (the overall lifetime divorce rate is highly debated, but 42% seems to be a reasonable estimate.). There’s some question over whether this number is accurate, though experts agree that the divorce rate for the chronically ill is very high.

I’m working on an article for Migraine.com about managing migraine’s impact on a marriage. One of the suggestions is to talk about migraine’s affect on the relationship. I say, “The truth will probably hurt both of you. Talk about it anyway.” And then I read this article from a healthy caregiver and was hurt by truths from someone else’s relationship. This is emotionally fraught stuff.

I applaud for her courage and honesty. The difficulties of caring for a chronically ill spouse need to be acknowledged, even though many of those who are sick won’t like what we read.

Here are some resources for learning how to support a marriage in the face of chronic illness (I’ll add my Migraine.com piece when it’s published):

Feb. 17, 2015: 8 Tips to Manage Migraine’s Impact on Marriage is that Migraine.com post I mentioned I was working on. It is migraine-focused, but the ideas apply to most, if not all, illnesses.

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Migraine & Sex. . . and Writing About Them

“Writing is easy. You just open a vein and bleed.” I think of this advice so often that I’ve thought of having it tattooed inside my wrist in the abbreviated form of “open, bleed” with an arrow to a vein. The advice came to mind most recently while I was writing about sex and migraine for Migraine & Headache Awareness Month for Migraine.com. In this case, though, I felt less like I was bleeding and more like I’d hung my dirty laundry in the front yard and shined a spotlight on it.

Chronic migraine complicates a person’s sex life, to say the least. Not enough people are willing to write about it openly and honestly, but it needs to be addressed, so I agreed to try. I wrote a draft and put it away, thinking I could go back and take my relationship out of it, make myself feel a little less vulnerable. Revisiting the draft a couple weeks later, I saw that I really couldn’t remove myself and still capture the heart of the message. So I sent it to Hart and asked if he was OK with all that I revealed. I held my breath, simultaneously hoping he’d give me the go ahead and that he would say “no way.”

All this agonizing reminds me of a post I wrote about my homesickness for Seattle when I lived in Boston. I posted it, cringing as I hit “publish.” Even a year later, I couldn’t read it without feeling overly exposed. I saw it earlier this week and thought, “Oh, that’s no big deal.” What felt at the time like baring my soul turned out to be nothing more than truthful, sincere writing. This, I believe, is a sign that I’ve grown as a writer, that I’m willing to dig deeper in the service of my craft.

Opening a vein and bleeding onto the page can be gut-wrenching and cringe-inducing. It also produces the most profound insights and touches readers in a way that holding back never can. Not to imply I do this all for you. I, too, benefit from writing and publishing thoughts outside my comfort zone. But it still makes me squirm. (So much so that I can only link to the aforementioned post about sex and migraine by writing about how awkward it was to write!)

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Migraine as Solitary Confinement, Controlling Lover

A non-migraineur who was close to the young woman who took her life a couple weeks ago, but didn’t know how much she was suffering, emailed me after reading my post and expressed regret that they hadn’t been able to help her. I tried to describe the isolation of chronic migraine, but capturing the experience was nearly impossible. I likened it to solitary confinement. I also explained that no matter how much the chronic migraineur may want to reach out or how hard someone tries to reach in, there’s an invisible, impenetrable barrier. While this seemed to help the person I was emailing with, it still seems an inadequate description of how much chronic migraine can distance a person from their loved ones.

When my migraine attacks were at their worst, Hart and I knew our relationship was suffering. We both wanted to improve our marriage, but I couldn’t work on it. It wasn’t that I didn’t want to, but that I simply could not. The very basics of keeping myself going took all my attention and energy. No matter how much I love my husband and wanted to nurture our relationship, I had to focus on myself.

At that time, Hart compared the role of migraine in our relationship to a difficult, demanding child. I think of it more as a controlling lover. We could have worked together on parenting a child, no matter how unruly the child or how much we disagreed. Though he could help with day-to-day life and getting me to appointments, migraine was still my “thing” and drove a wedge between us that I couldn’t see past. Migraine dictated what I did at every minute of every day. It was all that I thought about.

Solitary confinement and an affair with a controlling lover are the best ways I’ve come up with to illustrate the isolation of chronic migraine, but I know there have to be a million other ways to describe it. What’s your analogy?

Update: Just stumbled upon a post from 2007 where I asked about headache metaphors. Read the informative responses in the comments.

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Reader Newly in Love With Someone With Chronic Daily Headache Seeks Advice

A woman who has fallen in love with a man who has chronic daily headache has posted a comment asking for input on whether it is wise to stay in the relationship. Although I indulge in Dear Prudence during migraine attacks, I’m not an advice columnist myself. I’ll share my thoughts and would love for you to weigh, as I think anyone whose had a relationship and a headache disorder could provide a valuable perspective.

She wrote:

“I am divorced. I have met a wonderful man whom I love. However, he has had a headache non stop for 25 years. He has maintained a successful career and still works but has debilitating headache periods. I only know he feels bad when he tells me. But I’m starting to realize he feels bad all the time. I don’t understand how he’s not crazy. In other words it does not impaire [sic] dating. He says he feels better when relaxed. Tense work makes headaches worse. He’s been to the best headache clinics. We’ve been dating 5 months and got serious about a month ago. But I stress enormously about whether I have just fallen in love with someone that is disabled or will be. He’s just ideal for me except for the headache. I cannot imagine stopping dating when we are having such a good time. But I feel like I am taking on a disability that could leave me in a bad marriage and I want a good marriage.”

My immediate thought is that part of what she loves about this man is probably a direct result of who he has become because of his headache disorder. After all, we’re known for being brave and tenacious. Maybe his his chronic headache is as much an asset as a liability.

Just because one person has a physical disability doesn’t mean a marriage will be bad. It is undeniably something to deal with, but every person and every relationship has difficulties. It is fortunate that this one is known ahead of time.

This man appears to function quite well with his headaches and there’s no indication his condition is worsening. There’s also no guarantee they won’t worsen, nor is there a guarantee that the woman asking for advice won’t be diagnosed with a debilitating disease or disabled in a car accident.

Life is uncertain and you can only know so many variables going into a major decision. You can decide what you want out of a relationship and weigh all the factors you know and still be surprised, pleasantly or otherwise.

I write all this knowing that I was married before my migraine attacks became severely debilitating. It has caused an enormous strain on my relationship. My husband and I love each other very much and are committed to being together, but there’s no denying I’m not the energetic woman he married, nor am I the equal partner we both expected. Still, he tells me that he’d rather be with me sick than not be with me at all.

That may be the real question this advice seeker should ask herself: Would she rather be with this man even though he is sick than not with him at all?

Readers, you have loads of experience with this issue. What’s your advice?