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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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Revamping Traditions to Reduce Holiday Stress

If your headache disorder tends to flare up during the holidays or you get so stressed about getting everything done that you wind up harming your health, it may be time to rethink your holiday traditions. Start planning now to scale back the stress and fatigue of holidays while still honoring your most important traditions so you can join in the revelry instead of curling up alone in a dark room.

Read my suggestions in Holiday Traditions on Migraine.com.

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The Silencing Effect of Chronic Illness

“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)

And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.

I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.

Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.

The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.

It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.

It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.

Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.

 

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Compassion for a Friend Easier than Self-Compassion

Self-compassion is something I’ve been trying to develop for a while. I’ve definitely made progress — Toni Bernhard’s suggestion to imagine what you would say for a friend in your situation has been invaluable — but I still slip back into self-criticism.

When a friend was sidelined by severe back pain this summer, pain that wouldn’t let up no matter how faithfully she went to physical therapy, did her exercises, used her TENS unit, or applied ice, I got an interesting perspective on Toni Bernhard’s advice. Instead of criticizing my friend, thinking she needed to exercise or rest more or work harder to feel better, my immediate response was to think how unfair it was that she wasn’t getting better even though she was following all the rules.

Based on my experience with migraine, if I’d have had that same back pain, I would have been overwhelmed by self-criticism, wondering what I’d done wrong, thinking I’d be able to overcome it if I tried hard enough, thinking I was lazy and weak. Why is it so much easier to have compassion for others than for oneself?

Read more in Compassion for a Friend Far Exceeds Compassion for Myself on Migraine.com.

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How to Respond to “How Are You?”

When someone asks how you are, how do you respond? It’s a tough question when you have a life-altering illness — should you shrug it off with an “OK” and deny your own experience or be truthful and risk scaring off the other person?

My response varies depending on the person, how I feel in that moment, how much energy I have, and if I really want to get into it. It’s usually along the lines of “I’m still here,” “I’m alive,” “I’ve been better,” or “OK right now, though it’s been a rough week.” If I don’t want to talk about it, I immediately follow my response by turning the question around. Most people love to talk about what’s going on in their lives and are thrilled to have someone who is ready to listen.

100 Ways to Answer the Question “How Are You?” (PDF) is an excellent new resource from ChronicBabe that’ll help you answer that difficult question. There’s bound to be a suggestion that will help you no matter how you’re feeling on a particular day and how much you want to talk about.

I particularly like the section on authenticity where she points out that answering the question honestly can establish intimacy and trust, leading to a deeper connection between you and the people in your life and, thus, greater support. Need more encouragement to open up? Check out The Power and Strength of Vulnerability.