By

Chronic Illness Perspective: Life’s Minor Inconveniences

A tiny fire started in my microwave last Friday and I didn’t catch it until the smoke rolled into the dining room. We were 20 minutes from leaving town for the weekend, so I set up the medical-grade air filter and figured the smell would be gone by Sunday night. Um, no. Although I never actually saw flames, the smoke damage ruined the microwave and permeated the walls and cabinets.

This was a minor household mishap — no one was injured and the damage is small and fixable. What I can’t get over is that I found the situation funny.

Really? Who reacts to a house that smells like smoke and days of cleaning with amusement? Yet neither daunted me. I could only see that my kitchen would be the cleanest it has ever been and that I might be required to paint the kitchen cabinets, which I’ve wanted to do for years. Isn’t that weird?

Trying to figure out the sources of my amusement led me to chronic illness. The many strategies I’ve learned to keep illness from subsuming me are useful for managing any sort of distress. A problem that doesn’t bring harm to anyone and doesn’t permanently damage my home just isn’t that big of a deal.

The fact that I actually feel well enough this week to do the work played a large role in my response. If I were relegated to the couch and had to smell the smoke without being able to do anything about it, I’m sure I’d be pretty frustrated. Still, this is the kind of thing that would have sent me into a tailspin even in the years before I got too sick to cope with the world. Being stuck on the couch this week would have been annoying, but I don’t believe I would have been fretful and distraught.

Chronic illness has given me so much valuable perspective. I’m not grateful for being sick and I will never say it is a gift, but after being so sick for so long, the minor inconveniences of life don’t matter all that much. I do appreciate the perspective.

By

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!

By

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.

By

“Chronic Illness” & Being “Sick”: Disempowering Language?

People sometimes criticize me for saying I have a chronic illness or calling myself sick. They tell me it’s disempowering, that I’m being negative and limiting myself. I get the pop psychology behind the critiques and understand it may be helpful for many people to shed these labels. For me, however, it was crucial to embrace them.

I grew up believing I could do anything if I put my mind to it, that I could push through anything and succeed with hard work. For my first 13 years with chronic migraine, I did just that. I was laid up by “bad headaches” at times (sometimes for weeks at a time), but mostly I took drugs and soldiered on. Then the migraines got so bad that I could no longer pretend I was OK.

I felt like such a failure. Not only did I have horrendous head pain every day, I thought I was to blame for the changes in my life. I thought if I had been strong enough or worked hard enough, I would be able to live a normal life.

Many years later, I can tell you I was wrong. It took me a long time to believe that. First, I had to deprogram myself from all the brainwashing I’d done. Before I could do that, I had to open my eyes to the fact that I had a disabling illness. I had to accept that I had done nothing wrong and I had not failed. I had to believe it was possible for an illness – even one that included headache as the primary symptom – to be debilitating. I had to see that, while I could influence my health, it was ultimately beyond my control.

So, it’s been important for me to acknowledge that I can’t do some things because of migraine. It’s been vital for me to accept that migraine can be incapacitating. It’s been necessary to see my “failures” not as my own failings, but as a natural consequence of severe illness.

Despite what some people read into my language choices, I do not see myself as a victim. I do not seek pity. I do not believe migraine has ruined my life. I do not solely identify with illness (it’s part of me, but by no means all of me). My ego does not rest on having a chronic illness or being sick.

Maybe some people do have their identities intertwined with illness and need to shake it off to become psychologically healthy. That’s not me. Validating my experiences and emotions – rather than ignoring reality – has let me find peace in life with illness. That sense of peace was maddeningly elusive in the years I denied the truth.

By

Acceptance of Migraine, Chronic Illness

In Acceptance, Not Resignation on Migraine.com, I think I’ve finally captured how empowering it has been for me to accept that I have chronic migraine rather than constantly fighting against it. As with most of what I write for Migraine.com, this piece is migraine-focused, but it could apply for any headache disorder or, really, any chronic illness. An excerpt:

I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened it’s control over me.

By accepting that migraine is here to stay, I have stopped waiting to get my life back. Instead of wishing and waiting to feel better before I can laugh and play again, I’m more able to enjoy all that I do have and can do, even (or maybe especially) the small pleasures.

This may be my favorite post ever, not for my writing, but for everything the post represents. It seems paradoxical, but accepting migraine as a chronic illness that will always be with me has improved my life immeasurably. I’ve written about it before, though this is the first time that I feel like I really got to the heart of it.

What do you think of acceptance? Has it helped you? Or do you think it’s an absurd idea?