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Illness & Romantic Relationships

Chronic illness takes a massive toll on romantic relationships, particularly because one’s partner is also usually their caregiver. Unfortunately, there’s not much helpful information on the topic; even academic research is sparse. You can help by completing a short survey (it took me 10 minutes) on the impact of migraine on one’s life and relationships, conducted by headache specialist Dawn Marcus and researchers from the University of Pittsburgh. The survey closes this Thursday, February 28.

Here are a few resources on illness and relationships:

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It’s the Little Things, Like Folded Underwear

Seeing an oddly shaped stack of my clean, folded underwear brought tears to my eyes. It was a visual reminder of how kind my husband is. After working on TheraSpecs tasks all day on a Sunday, he’d done the dishes and folded the laundry that was decorating our family room. (Chores are normally my task since he’s crazy busy starting two businesses, but things pile up when I’m in a bad migraine spell.) And the guy FOLDED MY UNDERWEAR.

Not to bore you with the details of my undies, but you need a little background to understand why this is so great. For the first 13 years we lived together, I crumpled my underwear and threw it into a drawer. Then Hart’s mom did laundry for us once and folded them, thus introducing me to the wonders of folded underwear (they take up so little space in the drawer! and are so easy to find!). I never told Hart that I’d adopted a new practice and, until this week, when he’s folded laundry, he’s tossed it in a rumpled pile like always.

When I went to grab some underwear off the table, I saw two stacks. One I had folded and another folded, but slightly disheveled stack, which was Hart’s handiwork. It was so sweet I thought my heart would melt. He did his best to fold them, but each pair wound up in a strange, lumpy sort of shape. Because really, folding women’s underwear is not an intuitive thing, especially if you’ve never even worn them. But he tried and I never even asked him to.

People often ask how I manage to cope with such debilitating migraines. Having an incredible husband who does the little things is a huge help. I’d hate to be this mired in migraine without him.

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All in My Head?

“Your headaches are all in your head,” two uncles have told me recently. I think they were trying to be cute, playing on the notion that the pain is actually located in my head, so my illness must be in my head. I don’t think either one was trying to be insensitive. And yet, there’s not much someone could say to insult me more.

This illness has overtaken my life. It renders me unable to work and keeps me from spending time with friends and family. My house is a mess and I can barely keep up with feeding myself healthful food. To have a family member insinuate — even unintentionally — that I might making it up or am somehow mentally weak invalidates the immensity of my struggles.

The first uncle said it on Facebook and I ignored the comment. When another uncle, from the other side of the family, said it on the phone last night I said, “No, it’s in my neurology.” He said “Oh, is it?” and moved on to a different topic. I’ve been mulling over it all day, trying to decide what I could have said to this man in his 70s who knows little about migraine (after all, he refers to my illness as “headaches”). I could have pointed out that it is a neurological disorder, just like ALS and Alzheimer’s, both of which have had a significant impact on that side of the family. Migraine doesn’t have the same outcomes as those illnesses, though, and I didn’t want to scare him.

I’m still at a loss for the best way to deal with the comment. I should probably figure it out before any of my other uncles decide to tell me my migraines are all in my head. Any suggestions?

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Migraine, Careers, Weather, Happiness, Love

My husband left the best job he’s ever had so we could move to Phoenix for my health. He telecommuted at first, but it quickly became apparent that it wasn’t going to work. This is old news for me, but I haven’t shared it with you. I thought I was OK with how things were working out. Although Hart no longer has the job that he loved, he is starting his own company (yay, TheraSpecs!), which is something he’s always wanted to do. We’re both stressed about bills and the looming end of COBRA health coverage, but I thought I was taking it in stride.

Then Hart’s boss from his best job ever, in Boston, called to fill him in on the future direction of the company. It is exciting stuff; stuff Hart wanted to be a part of. Jobs and careers aren’t more important than people, of course. However, my husband having a job that doesn’t bore him and doesn’t overwork him, that paid well and had health insurance is worth a lot. I cried when he told me about the phone call. He gave up so much for me and the move to better weather only improved my migraines a bit.

I had felt significantly better on vacations to Phoenix, so we left Boston thinking we’d have a full life here. That we’d be able to go out frequently, have parties, take weekend trips. Instead, the migraines caught up to me after I’d been here two months. It was the weekend after we closed on our (adorable, fantastic) house and my mom dislocated her shoulder and broke a bone in it to boot. Real life came crashing down. My body realized it was no longer on vacation and the migraines were back. Not as bad as they were in Boston, but still regularly disabling.

I am much, much better now than I was my first year back in Phoenix, thanks to magnesium and cyproheptadine (which I’ve been on for seven weeks and still need to tell you about), but I’m still pretty wrung out by the migraines. I feel like my health will continue to improve. I just need to work out some kinks, like dosage and timing, and get myself on a regular schedule. That process is never as easy or as quick as I think it will be, but I still believe the life in Phoenix that Hart and I planned is close to becoming reality.

I’ve spent the last three days wondering if I could get myself well enough to move back to Boston so Hart could work for that company again. (I’m fully aware of how absurd that is — if I had that much control over my health, I’d have healed myself decades ago.) Never mind that the company may not need him anymore and that he’s in the (scary, uncertain, exciting) depths of doing what he’s always wanted. My mind grabbed onto the notion that there was only one solution and gnawed on it for days.

Finally it occurred to me that if I were healthy enough to move to a less stable climate, I’d be healthy enough to get a job for health insurance myself. I’d be healthy enough to be the woman Hart married, the one who’s always ready for an adventure. I know he wouldn’t trade that for any job.

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Invisible Illness Awareness Week

For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.

  • Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
  • The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
  • The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.

Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.